Your complete guide to hopping around the Boston Harbor Islands – Metro US

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Nixs Mate, Little Brewster and Spectacle might sound like nifty microbrew handles, but those are just three of several islands dotting Bostons harbor.

These islands were a part of city life and commerce, but are now a section of the Boston Harbor Islands National Recreation Area, the largest recreational open space in eastern Massachusetts. Numbering 34 islands in all, 13 lie in Bostons Inner and Outer Harbor, and theres no better way to catch a sea breeze and cool down in the summer than heading out on the water.

Historic sites

Little Brewster houses the nations oldest light station. However, its not the oldest lighthouse because, thanks to the enthusiasm of the Boston militia fighting the British during the War of Independence, the original lighthouse Americas first, built in 1716 was destroyed. The current one was constructed in 1783.

Boston Lights first female lighthouse keeper Dr. Sally Snowman will tell you all about the buildings history on the guided tour. You can climb to the top, but the 76 steps and confined space isnt for everybody. The 3.5-hour round-trip tour toLittle Brewster Island via ferry is available for $41 with the climb, or for $30 without it.

Fort Warren on Georges Island was constructed between 1833 and 1860 to guard Boston Harbor. It also served as a prison during the Civil War, as well as World War II, due to fears over German U-boat attacks. Since 1947, the fort has been in civilian hands as a tourist attraction. Theres a visitor center and museum, plus a caf and gift store. Georges Island is on the regular, seasonal ferry service route from Long Wharf, available between May and October.

Music

Berklee College of Musics free Summer in the City concert series extends to Castle, Georges and Spectacle islands this year. Mostly jazz, but with some pop, world and folk artists too, concerts on Georges Island are on Saturdays through Aug. 19; on Spectacle Island during a few Sundays in July; and on Castle Island on Saturdays throughout August. Check out the schools website for a complete schedule.

Cruises

Most cruises around the Harbor Islands do not include any stop-offs, but you do get an up close and personal history of the islands. The Boston Harbor Islands cruise on Northern Lights is a two-hour sail aboard a 1920s style vintage yacht. There is a narrated guide that covers the areas history and some stories about pirates and ghosts that supposedly haunt the islands. Cruises are available through August 19 at $40 for adults and $25 for children. boston-sailing.com

The Adirondack III Day Sail is also a two-hour cruise, but aboard an 80-foot all-wooden vessel modeled after 1890s style pilot schooners. The narrated tour covers the Inner Harbor Islands - Castle Island, Spectacle Island and Long Island, as well as Fort Independence. Trips are available through August at $48 and $28 for children.

Camping

Lovells and Peddocks Island have campgrounds,but dont expect glamping amenities. There are composting toilets only, no showers, no supplies and access to fresh water is only available on Peddocks, which also has yurts with cots. Campfires are not permitted on campsites, but are allowed below the high tide mark.Campers must bring one gallon of water per person per day. Plan to carry it all in and carry it all out.Reservations are required, so plan ahead.

Getting there

The Harbor Islands are among few places where the journey really is as fun as the destination. Most islands with any attractions are accessible by public ferry service fromLong Wharf North in Boston. For more info on getting there and what to do, check out bostonharborislands.org.

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Your complete guide to hopping around the Boston Harbor Islands - Metro US

MIA launching first Miami-Tortola flight to the British Virgin Islands – Miami Herald

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Miami Herald
MIA launching first Miami-Tortola flight to the British Virgin Islands
Miami Herald
Miami is getting its first-ever nonstop service to Tortola, British Virgin Islands, next month. On July 22, BVI Airways will begin offering two weekly, round-trip flights on Saturdays and Sundays to the British Virgin Islands' capital and largest ...

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MIA launching first Miami-Tortola flight to the British Virgin Islands - Miami Herald

RAMSI Ends: What’s Next for the Solomon Islands? – The Diplomat

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The mission was devised not simply as a peacekeeping operation, but as a program to rebuild the state.

The Regional Assistance Mission to Solomon Islands (RAMSI) will officially come to a completion on Friday, June 30. For the past 14 years the Australian-led mission has been assisting the Pacific Island country to reestablish stability and functionality after a period of ethnic violence from 1998 to 2003. During this period hundreds of people were killed, ten of thousands displaced, and the state was brought almost to collapse.

As a modern nation-state constructed out of a British colonial endeavor, the Solomon Islands brought together six large culturally distinct islands (and another 900 smaller islands) alongside 70 languages. Despite the creole of Pijin (closely related to Papua New Guineas Tok Pisin) developing throughout the colonial period as a lingua franca, an accompanying strong civic nationalism that could have transcended tribal divisions had failed to develop alongside it.

The second half of the 20th Century saw significant movement of people from the island Malaita, who were seeking opportunities in the capital of Honiara on the island Guadalcanal. Malaitans soon became the largest ethnic group in the capital and the dominant actors in many of the governments structures and business community. This led to significant resentment within the native Guale population. The increasing tensions led to the formation of two militia groups, the Isatabu Freedom Movement and the Malaita Eagle Force. Law and order began to collapse along with the states ability to deliver services, and economic activity was diminished.

Prior to 2003, Australia had been reluctant to intervene in the conflict. Australias role in the recent independence of Timor-Leste had aroused Indonesian suspicions of potential Australian sympathy towards the independence movement in West Papua. The thinking was that any use of military force in the region could have been perceived by Indonesia as an Australian fondness for regional interventions, compounding suspicions of Australias disregard for Indonesian sovereignty.

Yet with the invitation of the Solomon Islands government, and with increased concern about a failing state in Australias arc of instability, the RAMSI intervention was launched with the support of the Pacific Islands Forum.

Violence came to an almost immediate halt with the RAMSI intervention, and within a few weeks most of the militias weaponry had been confiscated and destroyed. Although Australia provided the bulk of the 2,200 military personnel and police, the other 15 member states of the Pacific Islands Forum all contributed some police and military personnel, as well advisors and diplomats to assist in the reconstruction of the state.

The mission was devised not simply as a peacekeeping operation, but as a program to rebuild the state. This involved significant investment in not only the Solomon Islands security apparatuses, but also within the countrys financial infrastructure, the justice system, and vital public services like health and education. Alongside reviving the countrys economy and building more inclusive civic institutions.

In a statement to the Solomon Islands Parliament on Tuesday, Prime Minister Manasseh Sogavare recognized the success of this state-building project when he declared that [l]aw and order has been restored, the machinery of Government is functioning again, the economy has recovered and the judicial system has been strengthened; our Police Force has regained the confidence of our people.

RAMSI has remained popular with with general population throughout its mission, and some sections of the Solomon Islands community are concerned that unrest will return when it departs. While government corruption in the Solomon Islands remains an endemic problem, and former warlord Jimmy Lusibaea is now the Infrastructure Minister, the chief of the RAMSI mission, Quinton Devlin, has stressed that the creation of a perfect state was never RAMSIs purpose. The mission was to restore stability to the country and assist in establishing institutions that the Solomon Islands can continue to develop themselves.

However, the success of RAMSI, once it fully departs the Solomon Islands on Friday, will be judged by whether this stability and security can be maintained, and whether the countrys revived institutions have the resilience to withstand the transition back to full sovereignty, and to accommodate the evolving needs of the Solomon Islands people.

For Australia, the end of RAMSI will signal a potential shift in Australias regional foreign policy. Will Australia continue to pursue a more active and interventionist foreign policy, or moves back towards the more reluctant position held prior to RAMSI, weary of Indonesias concerns. Of course the hope is that further interventions of this kind will not be necessary particularly in the Solomon Islands however the forthcoming referendum on Bougainvilles independence from Papua New Guinea (currently scheduled for mid-2019) will undoubtedly be carefully observed by the Australian government.

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Love Islands girls get territorial as they send boys off to new villa with perfume-covered clothes and pairs of knickers – Mirror.co.uk

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The Love Island girls have come up with a devious plan to ensure their men don't pull any of the new girls.

Gabby Allen, Olivia Attwood and Amber Davies get very territorial as they send their fellas off to the second villa.

In scenes set to air tonight, the girls are in the bedroom packing up their boys suitcases as it dawns on them that the new boys moving into their villa means that new girls may be joining Chris Hughes, Kem Cetinay, Marcel Somerville , Dom Lever and Jonny Mitchell somewhere else.

Gabby says she is confident in Marcel to stay faithful: "I do trust him not to do anything. He is my boyfriend, its not like Im just coupled up with him."

Olivia adds: "I dont have any [faith]. Have you met Chris? An absolute idiot he is."

She then tries to sabotage his chances of getting with any other girls by packing his worst clothes.

Amber does the same and sprays her perfume all over Kems clothes. She also puts a pair of her underwear in his case.

Later in new villa Casa Amor, the boys open their cases to unpack and Kem and Chris find Amber and Olivias underwear and that their clothes smell of perfume.

"She is marking her territory," Kem says.

As night falls, Chris and Kem try and fail to make a toast. Dom stands up and makes one instead, saying: "Five new girls and a new villa. Weve all got to get to know each other for three days.

"Its going to be absolutely manic so I just want everyone to enjoy themselves, get used to it because this is Love Island."

They all raise their glasses.

The ultimate test of loyalty has landed on the Island what will this mean for the Love Island couples?

* Love Island airs tonight at 9pm on ITV2

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Love Islands girls get territorial as they send boys off to new villa with perfume-covered clothes and pairs of knickers - Mirror.co.uk

Toronto Islands flooding has cost city $5M, mostly in lost ferry revenue – CP24 Toronto’s Breaking News

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Flooding that has damaged dozens of homes on the Toronto Islands and forced the suspension of ferry service for members of the public has cost the city nearly $5 million so far with the tally expected to go up further.

According to a report by the citys general manager of Parks, Forestry and Recreation, the flooding on the islands will cost the city about $4.88 million by the end of July, mostly due to lost ferry revenue and the cancellation of permits.

The report says that should the islands remain closed to the public through the end of August the cost resulting from reduced ferry ridership alone will be an additional $2.23 million.

The report also points out that capital costs for remediation, mitigation and adaptation cannot be fully estimated at this time, meaning that the total bill to taxpayers will likely rise further.

Since May, more than 45,000 sandbags, 1,000 meter bags and 27 industrial pumps have been deployed in an effort to protect homes and businesses but large parts of the sandbar have nonetheless been submerged.

In the short term it (the flooding) has jeopardized peoples homes, closed beaches and park spaces and had a significant impact on businesses over there, Mayor Tory said of the flooding during a news conference to discuss the citys emergency preparedness efforts on Thursday. There has been a cost already mainly through lost revenue of 5 million and in fact the cost going forward of actually reconstructing what has been damaged will be many millions more than that.

Ferry service to the island has been limited to residents and essential personnel since the beginning of May.

The report found that as a result only 14,000 people rode the ferry in May, which was down from 140,000 in May of 2016.

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Toronto Islands flooding has cost city $5M, mostly in lost ferry revenue - CP24 Toronto's Breaking News

MVA kicks off Flower Islands project – Saipan Tribune

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The Marianas Visitors Authority is moving forward with its Flower Islands Project, which aims to transform the islands into a flower-dotted destination.

With the guidance of internationally renowned landscape architect Junichi Inada, famed for helping create the Garden City of Singapore, the MVA held a series of meetings to share the vision of the project with the mayors of Saipan, Tinian, and Rota, Department of Lands and Natural Resources, Department of Public Lands, Commonwealth Ports Authority, Department of Public Works, Division of Parks & Grounds, Division of Forestry, and Micronesia Islands Natural Alliance.

During his visit, Inada also assessed current landscape in public areas and tourist sites on Saipan, Tinian, and Rota.

The Flower Islands Project aims to increase the competitiveness of the Marianas by rejuvenating our islands with trees and colorful flowers incorporated into our professional landscape architecture. At the same time, this new branding will create new business opportunities, said MVA managing director Christopher A. Concepcion. As the Flower Islands of the Pacific, we will create memorable experiences with visitors, engaging all five senses. We invite the entire Marianas community to become a part of this plan.

The Flower Islands Project master plan now under development will include long-and short-term phases providing workable guidelines on its implementation.

The plan will be shared with government agencies, private sector, schools and colleges to encourage everyones participation and contribution in achieving one common goal, said MVA Product Development manager Tatiana Babauta. In addition to boosting tourism, it will also develop natural habitats for trees and flowers, filter stormwater, and provide educational opportunities for plant propagation. And just imagine all the great photo opportunities!

Phase I of the plan will include a conceptual directional master plan for Saipan, Tinian, and Rota; a schematic plan for the Francisco C. Ada-Saipan International Airport, Tinian International Airport, Rota International Airport, and Banzai Cliff; a conceptual computer graphic montage for the Saipan airport, Tinian airport, Rota airport, and Airport Road toward Beach Road on Saipan; a topographical study model of Saipan, Tinian, Rota, and schematic image model of the Saipan airport; consultation on lighting posts beautification along the Beach Road pathway; consultation on horticultural nurseries on Saipan, Tinian, and Rota; consultation on acquisition of plants for Saipan, Tinian, and Rota; consultation on acquisition of horticultural equipment for Saipan, Tinian, and Rota; and consultation and coordination in regards to hanging flower baskets on Saipan, Tinian, and Rota. (Saipan Tribune)

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Prostitutes speak out against Senate health bill – CNN

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Licensed prostitutes in Nevada, working in legal brothels, are organizing against legislation they say will devastate them, other prostitutes across the nation and their families.

With Obamacare (Affordable Care Act), now under threat of being repealed and replaced, "thousands of prostitutes nationwide were, for the first time, able to obtain affordable health care insurance for themselves and their families," said a press release issued Thursday.

So, dubbing itself "Hookers for Health Care," this group plans to go "on a political offensive ... lobbying politicians, protesting in the streets, and waging battle on social media to stop the Republican effort."

At the helm is Alice Little, 27, who works near Carson City at Dennis Hof's Sagebrush Ranch brothel. She thinks about the cuts being proposed, the slashes to coverage for things like pregnancies and eating disorders and is outraged by the toll it will take on women.

"When I look at the folks that are making decisions, the majority of them are male voices," she said by phone. "They have no idea how they're affecting women's lives."

About a hundred women working in Hof's seven brothels have already signed up to be involved with this new movement. She says several dozen women and counting have already agreed to sign onto a petition she's drafting and that many are waiting to have their perspecitves recorded for social media purposes.

"These ladies are often stereotyped and I want to bring some humanity to their stories," said Little, whose mother is a cancer survivor. "We are people. We have families. We have the same health concerns as other Americans."

As independent contractors, she said, prostitutes are "at the mercy of the health care marketplace to obtain our own insurance" and are often reliant on Medicaid.

"I have been fortunate to amass a strong clientele and establish myself as a financially successful businesswoman within Nevada's legal brothel industry, but that can take time," Little said in the release. In fact, she's so successful Hof says she made about $500,000 last year.

But even with her success, Little knows plenty of women need a break.

"A young woman entering our business, who in some cases may also be a single mother with limited financial means, will also need time," Little said. "Expanded access to Medicaid for her or her child may be the only way that she is able to know that they will be protected in case of medical misfortune."

It's not just the prostitutes and their families that stand to lose if this new bill passes, Little adds. Consider the housekeepers, bartenders and cashiers who also work hard to be self-sustaining Nevadans. Also, added to the list of those she hopes to protect: brothel clients.

"Under Trumpcare insurers will be able to charge older consumers five times more than young consumers," she said. "People over the age of 65 make up a very large percentage of Nevada brothel clients. If these clients are forced to pay unfairly augmented health care costs, they will not have money on hand to spend on the things that make life worth living in the first place -- like sex."

Her advocacy, however, is not mirrored by her employer. Hof describes himself as fiscally conservative, "but don't bother me about abortion, who's having sex with who and weed; it's a personal choice."

He is a Trump supporter, though, who'd love to see Obamacare get tossed out.

"I believe in people taking responsibility for their own lives, and not asking for these kind of government handouts," he said. "You start giving these working girls free or discounted health care coverage, then what comes next? ... This is definitely not a road we want to go down."

But even while Hof disagrees with the politics of "Hookers for Health Care," he supports the involvement of women who work for him. He says there are 540 prostitutes affiliated with his brothels, and "These aren't your daddy's old hookers."

By that he says he means, "These aren't street walkers. They're professional working girls that work in a legal environment."

In fact, he says half of them have college educations, 20% have master's degrees, a few have doctorate degrees and one, an Ivy League educated professor, picks up hours to help pay off her huge student loans.

"I love that they're involved," he said. "These girls are smart, they will be running our country, and they vote."

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Will Trump deliver on his health-care promises to the American people? – Washington Post

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On the campaign trail and since taking office, President Trump has made some significant promises about the kind of health care hed provide for the American people.

But Trumps efforts to come through on these promises have faced several hurdles along the way. In March, the House failed to bring a bill to the floor for a vote, before later managing to pass a controversial one. The Congressional Budget Office determined that bill, if enacted, would leave 23 million more Americans uninsured in the next decade.

That House bill then moved to the Senate, and this weeks episode of Can He Do That? examines whats happened since.

On Tuesday, Senate Majority Leader Mitch McConnell (R-Ky.) decided to delay a vote on his health-care proposal, with a goal to submit a new version of the bill to the CBO by Friday. (The CBO determined the first version of the Senate bill would leave 22 million Americans uninsured in the next 10years and would reduce the deficit by $321 million.)

The new CBO review will take about two weeks, making for a pretty tight timeline for Senators to vote before August recess. The bill needs to win over 50 of the 52 Republican senators to pass.

So where do things stand now? What is President Trumps role in all of this? What changes can we expect in the Senates forthcoming version of the bill? And how far does this effort move the needle on the Republican promise to repeal and replace Obamacare?

Health policy reporter and author of The Health 202 newsletter Paige W. Cunningham answers these questions and explains whats at stake. Plus, we talk to Republican Mayor John Giles of Mesa, Ariz., about how health-care legislation affects his constituents.

Listen to the full episode below.

Each week, Can He Do That? examines the powers and limitations of the American presidency, focusing on one area where Trump is seemingly breaking precedent. We answer the critical questions about what todays news means for the future of the highest office in the nation.

Subscribe on Apple Podcasts, Stitcheror wherever you get your podcasts.

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Will Trump deliver on his health-care promises to the American people? - Washington Post

GOP races to strike health care deal by Friday, before July 4 recess – CBS News

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Senate Republican leaders are racing to strike a health care deal by Friday that appeases opposing factions of their conference and there appears to be no breakthrough yet in negotiations.

On one hand, there are moderate senators who are critical of the original bill's Medicaid provisions, who want more funding for opioid treatment, who want pre-existing conditions protected and who want low-income people to have access to affordable insurance.

"My focus is really again on ensuring lower-income citizens actually have the ability to have health plans that really cover the kind of things that need to be covered," said Sen. Bob Corker, R-Tennessee, who said Republicans are "moving to a place that resolves that issue."

"I'm not there yet, I know that," Sen. Shelley Moore Capito, R-West Virginia, told reporters as she headed to a closed-door Senate Republican Conference lunch. She had been pushing for an increase in opioid treatment funding.

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Senate GOP leaders are making changes to their proposed health care plan in hopes of receiving a better score from the Congressional Budget Offic...

Senate leaders have added two provisions to the measure: $45 billion in opioid treatment funding and the ability to use Health Savings Accounts (HSA) to pay for premiums.

Then there are conservatives who have been demanding for a full repeal of Obamacare, which they say the original plan wouldn't deliver.

"Unless it changes to a repeal bill, I can't vote for it," said Sen. Rand Paul, R-Kentucky, who advocated Thursday splitting the legislation into two pieces in order to improve the chances of passage.

One proposal floated by Sen. Ted Cruz, R-Texas is gaining some traction. It would allow any health insurance company to offer insurance plans that don't comply with Obamacare in a state if they're offering at least one that does comply with the health care law.

"I think there's a lot of appeal to that idea," Sen. Pat Toomey, R-Pennsylvania, said about the plan. "Anybody that likes Obamacare so much, they would have their Obamacare plan and they would also have the freedom to buy anything they like. I think it makes a lot of sense."

Sen. John Thune, R-South Dakota, a member of Senate leadership, told reporters that Cruz's plan could potentially be added to the bill as long as it's structured in a way "that ensures that the pools aren't adversely affected."

Some, like Sen. Rob Portman, R-Ohio, are concerned about whether Cruz's amendment would cover pre-existing conditions. Asked whether he backs the plan, he said, "It hasn't been fleshed out yet, so -- I believe that pre-existing conditions ought to be covered...There are a lot of moving parts."

Most lawmakers are leaving for their week-long July 4 recess Thursday and leadership has been aiming to reach an agreement on a revised health care bill by Friday in order to send it to the Congressional Budget Office (CBO) to have it scored over the break.

Sen. Lindsey Graham, R-South Carolina, warned Thursday that getting a deal by Friday is essential.

"If there's going to be one, it'll be by the end of the week. I don't think that not having a deal and going home is gonna get you a deal," he said. "I just think the further you get away from this place, the more pushback you'll get."

Members of Congress could almost certainly face unhappy constituents in their districts next week. A series of polls released Wednesday found that a majority of the public oppose the bill.

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GOP races to strike health care deal by Friday, before July 4 recess - CBS News

40 arrested as health-care bill protesters swarm Capitol Hill this week – Washington Post

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It seems everyone at the various health-care protests in Washington this week brought a story.

The Pennsylvania man who relied on the Affordable Care Act for his dialysis and was willing to get arrested so his senator understood the legislation was life and death. The D.C. woman who feared that her 27-year-old, nonverbal, autistic brother would be forced into an institution without Medicaid. And the Arlington father, Rick Hodges, who wondered if the Republican-proposed health-care bill would afford his teenage daughter with Down syndrome the opportunity to live a semi-independent life as an adult.

Its about so much more than health insurance, Hodges said. She has a preexisting condition. The country has chosen Medicaid to be the source of funding for people with disabilities. Thats terrifying for people with disabilities and their families.

Hodges joined a rally Wednesday in front of the U.S. Capitol urging the Senate to reject health-care legislation curbed in the Senate, which the nonpartisan Congressional Budget Office estimates would leave 22million more people uninsured by 2026. It was one in a string of legal and illegal protests on Capitol Hill this week decrying the bill.

[How the push for a Senate health-care vote fell apart amid GOP tensions]

On Wednesday, U.S. Capitol Police arrested 40 people who blocked hallways in Senate office buildings demanding to meet with their senators.

Please Mr. Toomey, dont let me die. Sen. Toomey, will you kill me? a group of about 10 Pennsylvania protesters with severe illnesses chanted in front of the office of Sen. Patrick J. Toomey (R-Pa.). U.S. Capitol Police officers dragged protesters away in handcuffs as they chanted, Kill the bill, dont kill me.

Similar protests were staged in the offices of Sens. Rob Portman (R-Ohio), Tom Cotton (R-Ark.), Marco Rubio (R-Fla.) and Lisa Murkowski (R-Alaska).

Eva Malecki, a spokeswoman for U.S. Capitol Police, said officers responded to numerous incidents of protests in office buildings, making arrests if demonstrators did not leave when asked.

After officers arrived on the scene, they warned the demonstrators to cease and desist with their unlawful demonstration activities, Malecki wrote in a statement, saying that protesters were charged with crowding, obstructing or incommoding. Those who refused to cease and desist were placed under arrest.

Later in the afternoon on Wednesday, hundreds of demonstrators gathered in front of the Capitol for a rally organized by Planned Parenthood, the American Civil Liberties Union and other progressive groups. The Senate bill would block federal funding to the womens health organization.

Protesters said the fact that Senate Majority Leader Mitch McConnell (R-Ky.) delayed a vote on the legislation until after the July4 recess meant protests were working.

Its a sign of how powerful peoples voices can be, said Erica Sackin, director of political communications at Planned Parenthood. But its too soon to claim victory. The bill is moving fast, and it may have been delayed, but we know that the fights not over.

[In the Trump era, a D.C. group has formed to help activists plan their protests]

Several high-profile Democrats spoke at Wednesdays rally, including Senate Minority Leader Charles E. Schumer (N.Y.), Rep. John Lewis (Ga.), House Minority Leader Nancy Pelosi (Calif.), and Sens. Chris Murphy (Conn.) and Cory Booker (N.J.).

If there is no struggle, there is no progress, Booker said, quoting a famous line by Frederick Douglass.

At a 23-hour interfaith prayer vigil nearby, clergy members and community leaders prayed that Medicaid would be preserved and the Senate would reject the health-care legislation. The vigil was to end Thursday afternoon.

Earlier in the week, protesters dressed as women from The Handmaids Tale stormed Capitol Hill as part of a protest organized by Planned Parenthood. In the novel and subsequent TV series, a right-wing religious group rules the country and fertile women are forced into reproductive servitude.

Last week, more than 40 disability advocates were arrested in front of McConnells office after the protesters, most of whom had a disability, removed themselves from wheelchairs and staged a die-in.

Raquel Bernstein, a policy intern for the National Council for Independent Living who attended Wednesdays rally in front of the Capitol, said the bill would devastate many in the disability community who rely on Medicaid to live independently. Bernstein, 22, has arthrogryposis and is covered by her parents insurance.

The last thing people want to do is go to institutions, she said. They would go without care and die before going to an institution.

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40 arrested as health-care bill protesters swarm Capitol Hill this week - Washington Post

On Health Care, a Promise, Not a Threat – Wall Street Journal (subscription)

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On Health Care, a Promise, Not a Threat
Wall Street Journal (subscription)
So this is no time for gloom. This moment in fact may be, perversely, promising. The failure so far of Senate Republicans to agree on a health-care bill provides an opening. Whatever happens the next few days, moderates and centrists... To Read the ...

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On Health Care, a Promise, Not a Threat - Wall Street Journal (subscription)

Fixing the 5 Percent – The Atlantic

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An oversized poster of the Seinfeld character Kramer watches over Phil Rizzutos daily routine. When Rizzuto, named for the famous New York Yankees shortstop, swallows his 6 a.m. pills, Kramer is looming over him, looking quizzical. Same for the 9 a.m., noon, 6 p.m., and midnight doses, each fistful of pills placed in a carefully labeled Dixie cup. I live on medication, he says.

Listen to the audio version of this article:Download the Audm app for your iPhone to listen to more titles.

Rizzutos daily life in Haverhill, Massachusetts, is a litany of challenges: His aides have to hoist his paralyzed legs from his bed to his motorized wheelchair and back again; keep the bag that collects his urine clean; tend to the gaping wound on his backside, which developed when he was left to lie still in bed too long; and help him avoid the panic that could claim anyone in his situationthat last one is particularly difficult since Rizzutos obsessive-compulsive disorder drives him to want to do everything for himself.

After more than a year of emergency and rehabilitative care following a devastating car accident, Rizzuto moved into a YMCA-run housing complex in this gritty New England town. But he still endured constant medical emergencies. I was back and forth and in and out of the hospitals so much, it was like I didnt know I had an apartment here, the 56-year-old says, sitting in his small studio. His open wound kept getting infected; his diaphragm, weakened by his injury and his inability to quit smoking, left him gasping for breath; his urine-collection bag slipped out; his demons kept getting the better of him. The government eventually covered the cost of his care, but the relentless need for medical attention was exhausting and demeaning.

Then he opted into a Massachusetts health-care program called One Care that focuses on people with complex medical needs who are on Medicare. One Care provides 71 hours of aide support a week, a twice-weekly visit from a massage therapist, twice-monthly psychiatric care, a wheelchair support group, and a nurse practitioner who oversees and coordinates Rizzutos care. If he struggles between visitsor just wants to talkshes available by phone, even on weekends and after hours. Now, his life has a routine and a discipline that keeps emergencies at bay. The difference its made he says, unable to fully express his gratitude. He estimates his hospital visits have dropped at least 75 percent since the One Care program took charge of his health. I would hate like hell to not have them.

The program that has helped Rizzuto is part of a nationwide movement to improve care for people struggling with very complicated medical needsso-called super-usersthe 5 percent of patients who account for about half of the countrys health-care spending. (Surgeon and New Yorker writer Atul Gawande outlined the problem and one solution in a definitive 2011 piece about the Camden Coalition of Healthcare Providers.) Some of these super-user programs say they provide cost savings of as much as 20 to 40 percent after a few years, as well as provide the kind of advantages offered to Rizzuto: fewer stressful hospital visits, better mental and physical health, and the satisfaction of being treated like a person instead of a package of problems. The program accomplishes this by shifting the focus of medical care. Instead of responding to complications, the care team tries to prevent them. You cant even get to the medical issue until youve figured out: Do they have a place to sleep, do they have housing theyre not going to lose, do they have food in their refrigerator, do they have a refrigerator? says Christopher Palmieri, the president and CEO of the nonprofit Commonwealth Care Alliance, which manages 80 percent of One Care patients, including Rizzuto.

Despite its successes, this care movement, which doesnt go by any catchy nameone doctor gave it the clunky title high-impact, relationship-based primary careis scattered among a handful of states and is advancing only very slowly across the country. There is general agreement that these programs must address a range of social and pragmatic needs, like transportation, housing, nutrition, isolation, emotional well-being, and medical problems. But the details of each program are different. Everyones trying their home brew, says Dr. Harlan Krumholz, a cardiologist and health-care researcher at Yale University and Yale-New Haven Hospital.

The one thing all of the super-user care programs have in common is a mantra that could have come from Cosmo Kramer himself: Stay the hell out of the hospital. Hospitals, these folks argue, often make sick people sicker. Theyre sources of infection to vulnerable patients. Theyre disorienting. They run costly tests and look for issues that are better left alone. Super-users, says Krumholz, represent a failure of the system.

Medical care is dangerous, says Dr. Rushika Fernandopulle, the co-founder and CEO of Iora Health, a leading practitioner of a more holistic approach to health. Fernandopulle says a big part of his companys business model involves fighting to keep people out of the hospitalnot just because its expensive, but because the care they will get puts them at higher risk for other problems. Medicare patients saw roughly a 40 percent drop in hospitalizations after Iora took over their care, Fernandopulle says.

For Fernandopulle, one patient in particular illustrates this phenomenon of snowballing medical care. That patient was an 80-year-old woman, fairly healthy but with hypertension and arthritis, who one day saw red in the toilet after urinating. She told her primary-care doctor, who sent her to a urologist; the urologist worried it might be cancer and ordered a catheter inserted. Before the procedure, a nurse asked the octogenarian if she ever felt weak or dizzy. (Of course she didthink about it.) When the woman said yes, a heart monitor was ordered: It showed a dip in her overnight heart rate. A cardiologist then scheduled the woman for a pacemaker.

This is what I mean by the vortex, Fernandopulle says, noting that inserting a pacemaker would be risky and provide no clear benefit. The womans condition might be explained in a much more low-tech way: a beet salad, for example, could be the culprit behind the red pee, and a prescribed medication might trigger the heart irregularity. I called the cardiologist and politely declined the pacemaker for this patient, Fernandopulle says. Part of the problem is that, while each doctor gets paid for each procedure he or she performs, usually no one gets paid for taking a step back and using common sense to think about what would genuinely help the patient.

The health-care system as a whole is out of balance, says Dr. Donald Berwick, the former head of the Centers for Medicare and Medicaid Services under President Obama. We put far more into hospital care than we do keeping people from having to be in the hospital. Hospital stays cost more than anything else in the health-care system; an average inpatient admission runs nearly $2,000 a day, and an intensive-care stay can easily cost $7,000 a day. In 2012, a typical hospital stay topped $10,000, according to the federal Agency for Healthcare Research and Quality. Caring for an Iora patient, on the other hand, typically costs about $3 a day and can reduce hospitalizations by 40 to 50 percent, Fernandopulle says. All of the physicians and advocates we interviewed who support this type of high-needs care are quick to note that their goal isnt to deprive people of medical care. If someone doesnt get needed heart surgery, they will end up in worse shape; no one will benefit. Their aim is appropriate, Goldilocks care: not too much, not too little.

The model hinges on establishing strong, trusting relationshipsbut that doesnt always come easily. Some patients jump on board; sometimes it takes six months to establish a connection, Tremblay says, recalling one patient who refused to talk to her for nearly five months before finally accepting help. She has become profoundly invested in her patients care. Every time we send someone to the hospital, its stressful, for both the patients and caregivers, Tremblay says. We send someone in [and] we kind of shudder, Are they going to come out better?

One big challenge to providing care for patients with complex needs is finding them. Commonwealth Care, for instance, has struggled to identify people who will benefit from its program. Any Massachusetts resident who receives both Medicare and Medicaid is eligible to join One Care. Commonwealth Care Alliance, which serves most of these patients, had to hire extra staff to track down potential clients. When Commonwealth Care started four years ago, 43 percent of these potential clients were considered unreachable, for reasons like having an unknown address. Today, that rate has shrunk to 32 percent.

Why is it so hard to track down needy patients? Some people are so isolated and disengaged that theyre largely invisible. Others patients are expensive and challenging today but might soon recover. And still others are doing fine now but might have a setback that throws them off balance for months. In fact, 60 to 80 percent of patients who are super-users now wont be a year from now, Sevin says, and different people will be.

There are also people who will be perennially expensivebecause their disease requires a costly drug, for instance. And there are those who will be expensive for a short timesay, for the few months after an organ transplant. Theres no point in wasting time trying to bring either groups medical expenses down.

Fernandopulle says the only effective way to identify people at risk for super use is to ask them two questions: How do you think your health is? and How confident are you in managing your health?

If they answer, Poor, poor, they are at huge risk, he says.

On a recent sweltering day, Rizzuto met his wheelchair support group at a small zoo in suburban Boston. Keeping cool in the above-90-degree heat wasnt easy for Rizzuto. Paralysis robs people of their ability to regulate body temperature. One of Rizzutos aides, Bill Regan, came prepared with water, ice packs, sandwiches, and a spray bottle that he frequently spritzed on Rizzutos face and legs.

Rizzuto says these interactions with other people in wheelchairs help lift his mood, though on this trip he seemed more focused on watching a brown bear, several snakes, and tiny, hyperactive cotton-topped tamarins. He never could have made it around the zoo without a motorized wheelchairthough it took Rizzuto a year to convince the state to buy it for him. One of the first things Commonwealth Care Alliance does when signing on a new One Care client is to assess the persons equipment needs, Tremblay says.

One Care is a partnership between Massachusettss Medicaid agency and the federal Centers for Medicare and Medicaid, and it focuses solely on patients ages 21 to 64 with multiple, complex medical and behavioral issues. (An older program, Senior Care Options, takes the same approach for patients over 65.) Most of Commonwealth Cares 13,500 One Care clients earn less than $20,000 a year; some are homeless; the majority of them have a serious mental illness or substance-use disorder, as well as multiple other chronic health conditions.

This high-touch care approach is beginning to save money, says Palmieri. A report last year by the Commonwealth Fund found that among 4,500 members of One Care, patients enrolled for 12 continuous months had 7.5 percent fewer hospital admissions and 6.4 percent fewer emergency-room visits. For those enrolled in the program for at least 18 months, hospital admissions dropped 20 percent, the study found.

Although each model of high-touch care is different, the basics are the same: focusing on prevention, ensuring basic needs are met, reducing unnecessary treatment, and building relationships with patients. At Stanford University, for example, one young man with severe anxiety and obsessive-compulsive disorder required constant reassurance (in addition to his multiple medications) from doctors and emergency departments. In a traditional care system, emergency-room staff might roll their eyes and quickly send him on his way. Instead, Dr. Alan Glaseroff, the co-founder of Stanfords Coordinated Care program to treat high-needs university employees and their family members, gave the 19-year-old his phone number. At first, whenever his anxiety or OCD took control, the young man called Glaseroff or another care coordinator as many as seven times a day.

But slowly, over the course of three years, the man learned to think before he called. If he saw spots in his eyes, hed wait for a few minutes to see if they went away. He was taught to use mindfulness techniques, and if the symptom persisted, he would run through a checklist to see if it was really something to be concerned about. He ended up calling the clinic every two to three weeks, rather than multiple times a day, and learned not to lean on the clinics staff for minor issues. Now, he hardly needs us, Glaseroff says.

Creating viable long-term plans like this means far fewer emergencies. In fact, in its first three years, the Stanford program cut emergency-room visits for its 253 patients by 59 percent, hospital admissions by 29 percent, and total cost per patient by 13 percent, says Glaseroff, who teaches this model of care in two-day workshops across the country. According to the study, the Stanford practice saved the university $1.8 million and now has nearly twice as many patients.

The secret to the cost-savings, Glaseroff says, is for patients to use hospitals and doctors only when absolutely necessary and to rely for most of their care on empatheticand relatively inexpensivemedical assistants, who check in with each patient about once a week. In the past four years, in an industry known for its high burnout and turnover, not one of his practices care coordinators has left, Glaseroff says. Theyre not allowed to diagnose and treat, but theyre really good at the people stuff, he says. The core is being given responsibility for people, not for tasks.

Patients in the program have responsibilities as well as rights, Glaseroff says. They are expected to show up for their medical appointments and to come on time out of fairness to others. Theyre told to call the clinic if they can before heading to the emergency room and then wait a few minutes for a call back, Glaseroff says. They are expected to do their part to engage with their care coordinator, even if the medical system hasnt always treated them well in the past. Its patient self-managementwhat people do within their chronic illness 365 days a yearthat matters the most, he says.

For the high-touch model to work financially, large numbers of patients have to stick around long enough to recoup the upfront investment in their care. Today, there are only a few pools of people stable enough to sustain this model: people who work for major employers, like Stanford University, and those insured by the federal government.

Iora provides health care to workers at large, stable employers like the Dartmouth College Employees, the New England Carpenters Benefits Fund, a union trust, and members of Medicaid Advantage plans, like Humana and Tufts Health Plan. This gives them a big group of customers with high needs and the corporate muscle to avoid being pushed around by hospitals that dont want to lose patients, Fernandopulle says.

If he loses customers to other insurance carriers in the first year or two, hell have all the upfront costs and none of the savings. A five-year time horizon allows Iora to recoup its upfront investment and get ahead of problemscontrolling diabetes before it leads to a heart attack, for instance, says Fernandopulle, whose company oversees care for about 20,000 patients in eight states.

Iora and another company with a similar approach, Landmark Health, also provide care to people on Medicare Advantagea government-funded, privately run program. About a third of people on Medicare now belong to Medicare Advantage programs, which were created by the Affordable Care Act. The Trump administration and Republicans have proposed huge cuts to Medicaid over the next decade. Its unclear, however, whether such cuts would paralyze efforts at innovation or provide more urgency to reduce health-care spending. It is a bipartisan issue that the current costs of health care are unsustainable, Yales Krumholz says, whether driven by empathy for those who are disadvantaged and suffering or by economic imperative.

But there are also built-in disincentives to this kind of high-touch care. One of the most obvious is that hospitals make money on patients. If they succeed in decreasing readmissions, they also limit their own earnings. Despite efforts to replace fee-for-service care with so-called global payments, the fact is that currently most health-care systems are still operating in an environment where reducing emergency-department and inpatient use hurts their bottom line, says Dr. Seth Berkowitz, a primary-care doctor at Massachusetts General Hospital who studies how addressing patients social needs improves their health and lowers costs.

Moreover, the model is challenging to scale, because all health care is local. State laws, hospital structures, and needs differ from place to place. What works in Florida doesnt work in Washington state, and vice versa, notes Fernandopulle, whose frequent-flyer miles attest to his attempts to learn about new markets.

Slowly, though, these scattershot efforts may be coalescing into a larger movement. Fernandopulle says its getting easier for companies like his to raise money in the private sector. Other factors seem to be coming together, too. Technology allows health-care companies to more easily identify people at risk of becoming super-users, track their progress, and standardize some of their treatments. Theres broad public consensus, gaining momentum in recent years, that health-care costs need to come down, says Dr. J. Michael McGinnis, the executive officer of the National Academy of Medicine, an advisory body formerly known as the Institute of Medicine. Now the issue is not whether; its how.

Rizzuto is lucky that he was treated for his 2012 car accident in Massachusetts. If hed had to recover in neighboring New Hampshire, where someone elses road rage landed him in a ditch and then in a month-long coma, hed probably still be making near-weekly trips to the emergency room. The crash left his spine broken in two places and exacerbated his post-traumatic-stress disorder and a concussion that still makes him feel like I have some scramblage with my brain.

The paralysis has left him with limited control of the outer three fingers on each handrestricting his ability to play his beloved guitarand he cant breathe deeply enough or with enough control to sing anymore. His core muscles are weak, too, Rizzuto says, explaining why his torso wobbles uncontrollably as he speaks. Im so close to being a quadriplegic, its crazy, he says. Rizzuto lifts his t-shirt to reveal small, circular burn marks dotting his chest. He knows he needs to quit smokingand will have to before his upcoming surgery to close the wound on his back, but it has been a struggle. Rizzuto says he often spaces out with a cigarette between his fingers and doesnt notice hes doing himself damage until its too late. Theres just so much to get used to, he says.

But he has also come to terms with his current life. Despite everything that has happened, he still has his adult twin sons, a daughter, a granddaughter, a safe place to live, and caregivers who really care. And so he goes on living the best life he can. He even hopes to start talking to high-school kids about his experiences. Im very fortunate, Rizzuto says. I dont know why. Maybe its because Im supposed to do something with this stupid accident that happened to me.

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Fixing the 5 Percent - The Atlantic

Health Care Bill Latest: Will Republicans and Democrats Work Together? – NBCNews.com

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Health Care Bill Latest: Will Republicans and Democrats Work Together? Thu, Jun 29. In an effort to reach a compromise, some moderate GOP senators are considering redrafting the health care bill to include items that could bring Democratic senators on ...

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Health Care Bill Latest: Will Republicans and Democrats Work Together? - NBCNews.com

Congress responds as Trump’s attack on TV co-host distracts from health care, other business – CBS News

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As the U.S. Senate looked to a day of negotiating on health care legislation Thursday, President Donald Trump at 8:52 a.m. began unleashing tweets attacking the IQ, mental stability and physical appearance of MSNBC "Morning Joe" co-host Mika Brzezinski.

White House deputy press secretary Sarah Huckabee Sanders defended the president's behavior in a Thursday afternoon press briefing, saying "the American people elected a fighter," and that's what they got.

But Republicans and Democrats criticized the president for his tweets -- shocking even for Mr. Trump's Twitter account -- as the Senate struggles to propose a passable bill on health care. Mr. Trump met Wednesday with senators earlier this week as he attempts to negotiate the bill, and Vice President Mike Pence on Thursday met one-on-one with senators on Capitol Hill.

The tweets also detracted from the White House's designated policy focus of the week -- energy -- and two bills expected to pass in the House Thursday to crack down on immigrants who commit crimes and attempt to re-enter the country illegally, and on "sanctuary cities" refusing to cooperate with federal immigration authorities. Mr. Trump made stricter stances on immigration -- a theme drowned out by his tweets Thursday -- a central message of his campaign.

Both Republicans and Democrats criticized the president Thursday.

Sen. Lindsey Graham (R-South Carolina), who told CBS News' "Face the Nation" last month that the president is "his own worst enemy" with counterproductive tweets, said Mr. Trump behaved "beneath the office."

Alaska GOP Sen. Lisa Murkowski told Mr. Trump to, "Stop it!"

Rep. Lynn Jenkins, a Kansas Republican, said the president's Twitter outburst was, "not OK."

Rep. Carlos Curbelo (R-Florida) pointed out that the shooting at a congressional baseball practice -- after which Mr. Trump himself urged unity -- was just two weeks ago. House Majority Whip Steve Scalise (R-Louisiana) is still in the hospital after he was seriously injured by a shot to the hip.

Sen. Susan Collins (R-Maine) urged "respect" and "civility."

Rep. Mike Coffman (R-Colorado) used the hashtag, "StopTheTwitterTantrums."

Democrats were even more blunt.

House Minority Leader Nancy Pelosi (D-California) called Mr. Trump's tweets, "so blatantly sexist I don't even know that there's any question about it."

"I just don't know why the Republicans, they can tolerate almost anything: a candidate beating up a reporter and then cheering him on as he arrives in Congress, the tweets of the president of the United States," Pelosi added, referring to Montana Republican Rep. Greg Gianforte's assault on a reporter the night before he was elected to Congress.

Rep. Lois Frankel (D-Florida), in a press conference with more than two dozen Democratic members of Congress, called Mr. Trump the "cyber bully in chief."

"And once again, he is ... embarrassing our nation with what I call his bloody tweets," Frankel said.

Other Democrats pointed out that Mr. Trump is hurting legislative progress. Rep. Chellie Pingree (D-Maine), called the president's attacks on the media a "constant distraction."

Rep. David Cicilline (D-Rhode Island) asked anyone to tell him how the president's tweets help "create jobs" or "make health care better," issues Mr. Trump has said are among his top priorities.

Mr. Trump didn't stop criticizing the media Thursday. As the House and Senate wrapped up their legislative business before the July 4 holiday, Mr. Trump, at a Department of Energy event with Vice President Mike Pence and Secretary of Energy Rick Perry Thursday afternoon, repeated his frequent line that CNN is "fake news."

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Medicaid becomes big threat to GOP’s healthcare revival – The Hill

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The biggest problem for Senate Republicans struggling to revive their healthcare legislation is the one that has bedeviled them from the beginning: Medicaid.

Deep cuts to the social safety net have led to a revolt from centrist GOP senators backed up by their home-state governors, who accepted federal funding under the Affordable Care Act to expand their Medicaid rolls.

They are all worried that the Senate bills unraveling of that expansion would leave millions of people without health insurance, a belief bolstered by a nonpartisan budget analysis that found 22 million more people would be uninsured in the bills first decade as law.

That would turn off Senate conservatives, whom Senate Majority Leader Mitch McConnellMitch McConnellGOP leaders prepared to make big boost to healthcare innovation fund GOP scrambles to win centrist votes on ObamaCare repeal Overnight Energy: Trump vows to bring American energy dominance MORE (R-Ky.) is also struggling to win over.

Sen. Pat Toomey (R-Pa.), asked Wednesday how important it was to keep Senate language restricting Medicaids growth, told reporters its very important.

Pressed on whether his support for the legislation hinges on its inclusion, he said, Its very, very important to me.

Senate leadership is working under a tight time frame, aiming to wrap up negotiations by the end of this week and then send a revised version of the bill for the Congressional Budget Office (CBO) to score over the weeklong recess. But theres deep skepticism that can happen by Friday.

Medicaid has long been seen as a high hurdle to getting healthcare reform done in the Senate.

It was less of an issue in the House, which passed its ObamaCare repeal-and-replace legislation in May after a battle that centered more on what rules insurers would have to meet in offering insurance.

Conservatives in the House and Senate alike have sought changes to ObamaCare that would lower premium costs and have looked to weaken ObamaCares rules to allow insurers to offer cheaper coverage plans.

In the Senate, Medicaid has been a much bigger part of the debate, in part because 20 Republican senators almost half of the conference represent states that accepted the expansion. These senators are concerned about how changes to the healthcare law will affect constituents across their states.

The Senate bill begins ratcheting down the federal match for expansion states in 2021, reverting it to pre-ObamaCare levels by 2024. The House took a more conservative approach and included language in its bill that would have ended the expansion in 2020.

But the Senate approach has not won over all of the senators from Medicaid expansion states, who were advocating a seven-year phaseout of the extra federal funds for Medicaid expansion.

Another unresolved issue is how to calculate spending on the Medicaid program.

Both the House and Senate bills institute a per person cap on Medicaid funding for each state. That cap would be adjusted annually for inflation, but there are disagreements on what formula should be used.

The current language in the Senate bill includes deeper cuts than the House beginning in 2025. It ties the growth rate for Medicaid funding to the consumer price index for medical care before switching it to CPI-U in 2025 which would lead to deeper cuts. This is the language that Toomey and other conservatives want to make sure stays in the bill.

In its analysis, the CBO estimated 15 million fewer people would be enrolled in Medicaid by 2026 under the Senate bill, which it said would lead to a $772 billion cut to the program.

After an effort to hold a vote on the bill this week was delayed, Capito and Portman cited Medicaid in announcing their opposition to the bill.

Portman and Capito represent Medicaid expansion states that have been hit hard by the opioid epidemic. Medicaid is a large payer of services for those with an opioid addiction.

The two had been pushing for $45 billion over a decade to combat the opioid addiction crisis. But the bill falls far short of their ask, instead including just $2 billion for fiscal 2018.

McConnell could put more money in that pot, but Capito indicated Tuesday that probably wouldnt be enough to win her vote.

Ohio Gov. John Kasich (R) who has been calling for a bipartisan compromise on healthcare said hes warned Portman against being won over by minor concessions.

I told him, If they hand you a few billion dollars on opioids thats like spitting in the ocean, compared with the billions the bill would cut from Medicaid, Kasich said at a press conference Tuesday.

One option for leadership would be to soften the Medicaid provisions for moderates and include more flexibility on insurance regulations for conservatives. An aide to Sen. Mike LeeMike LeeGOP scrambles to win centrist votes on ObamaCare repeal Overnight Healthcare: Conservatives seek changes to Senate bill | GOP may keep ObamaCare tax in health bill | Trump taps new surgeon general Conservatives seek changes to Senate healthcare bill MORE (R-Utah) confirmed he may be open to Medicaid changes if Americans were given more relief from ObamaCares Title I regulations, which are ObamaCares insurance rules.

McConnell has nearly $200 billion in savings to pad the bill in an effort to win enough support for passage. But its unclear if thats enough.

Tinkering around the edges, putting a little bit of money in for one program or another, is not going to be sufficient, Collins told reporters Wednesday. I want to see changes that would have a real impact on the Medicaid issues and the number of people insured.

When asked how to pay for a longer transition for Medicaid or a higher cap, Senate Finance Committee Chairman Orrin HatchOrrin HatchSenators introduce 'cyber hygiene' bill Overnight Finance: CBO says debt ceiling will be hit in October | Senate passes updated Russia sanctions bill | GOP senator rips sugar deal with Mexico GOP senator on Trump's 'face-lift' tweet: 'Every once in awhile you get a dipsy-doodle' MORE (R-Utah) didnt know.

Well thats the question for everything, he said. How are we going to pay for all this stuff no matter what we do?

So, how can leadership massage the bill in a way to get both conservatives and moderates on board?

Even porcupines make love, Sen. Pat RobertsPat RobertsMedicaid becomes big threat to GOPs healthcare revival GOP senator on resolving healthcare differences: 'Even porcupines make love' GOP chairman wants 'robust' tax reform process in the Senate MORE (R-Kan.) joked.

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Patients Who Tested Positive For Genetic Mutations Fear Bias … – NPR – NPR

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Patients who underwent genetic screenings now fear that documentation of the results in their medical records could lead to problems if a new health law is enacted. Sam Edwards/Caiaimage/Getty Images hide caption

Patients who underwent genetic screenings now fear that documentation of the results in their medical records could lead to problems if a new health law is enacted.

Two years ago, Cheasanee Huette, a 20-year-old college student in Northern California, decided to find out if she was a carrier of the genetic mutation that gave rise to a disease that killed her mother. She took comfort in knowing that whatever the result, she'd be protected by the Affordable Care Act's guarantees of insurance coverage for pre-existing conditions.

Her results came back positive. Like her mother, she's a carrier of one of the mutations known as Lynch syndrome. The term refers to a cluster of mutations that can boost the risk of a wide range of cancers, particularly colon and rectal.

As Republican lawmakers advance proposals to overhaul the ACA's consumer protections, Huette frets that her future health coverage and employment options will be defined by that test.

She even wonders if documentation of the mutation in her medical records and related screenings could rule out individual insurance plans. She's currently covered under her father's policy. "Once I move to my own health care plan, I'm concerned about who is going to be willing to cover me, and how much will that cost," she says.

In recent years, doctors have urged patients to be screened for a variety of diseases and predisposition to illness, confident it would not affect their future insurability. Being predisposed to an illness such as carrying the BRCA gene mutations associated with breast and ovarian cancer does not mean a patient will come down with the illness. But knowing they could be at risk may allow patients to take steps to prevent its development.

Under the current health law, many screening tests for widespread conditions such as prediabetes are covered in full by insurance. The Centers for Disease Control and Prevention and the American Medical Association have urged primary care doctors to test patients at risk for prediabetes. But doctors, genetic counselors and patient advocacy groups now worry that people will shy away from testing as the ACA's future becomes more uncertain.

Dr. Kenneth Lin, a family physician at Georgetown University School of Medicine in Washington, D.C., says if the changes proposed by the GOP become law, "you can bet that I'll be even more reluctant to test patients or record the diagnosis of prediabetes in their charts." He thinks such a notation could mean hundreds of dollars a month more in premiums for individuals in some states under the new bill.

Huette says she's sharing her story publicly since her genetic mutation is already on her medical record.

But elsewhere, there have been "panicked expressions of concern," says Lisa Schlager of the patient advocacy group Facing Our Risk of Cancer Empowered (FORCE). "Somebody who had cancer even saying, 'I don't want my daughter to test now.' Or 'I'm going to be dropped from my insurance because I have the BRCA mutation.' There's a lot of fear."

Those fears, which come in an era of accelerating genetics-driven medicine, rest upon whether a gap that was closed by the ACA will be reopened. That remains unclear.

A law passed in 2008, the Genetic Information Nondiscrimination Act, bans health insurance discrimination if someone tests positive for a mutation. But that protection stops once the mutation causes "manifest disease" essentially, a diagnosable health condition.

That means "when you become symptomatic," although it's not clear how severe the symptoms must be to constitute having the disease, says Mark Rothstein, an attorney and bioethicist at the University of Louisville School of Medicine in Kentucky, who has written extensively about GINA.

The ACA, passed two years after GINA, closed that gap by barring health insurance discrimination based on pre-existing conditions, Rothstein says.

On paper, the legislation unveiled by Senate Majority Leader Mitch McConnell last week wouldn't let insurers set higher rates for people with pre-existing conditions, but it could effectively exclude such patients from coverage by allowing states to offer insurance plans that don't cover certain maladies, health analysts say. Meanwhile, the bill that passed the House last month does have a provision that allows states to waive protections for people with pre-existing conditions, if they have a gap in coverage of 63 days or longer in the prior year.

When members of a Lynch Syndrome social media group were asked for their views on genetic testing amid the current health care debate, about two dozen men and women responded. Nearly all said they were delaying action for themselves or suggesting that family members, particularly children, hold off.

Huette was the only one who agreed to speak for attribution. She says before the ACA was enacted, she witnessed the impact that fears about insurance coverage had on patients. Her mother, a veterinarian, had wanted to run her own practice but instead took a federal government job for the guarantee of health insurance. She died at the age of 57 of pancreatic cancer, one of six malignancies she had been diagnosed with over the years.

Huette says she doesn't regret getting tested. Without the result, Huette points out, how would she have persuaded a doctor to give her a colonoscopy in her 20s?

"Ultimately, my health is more important than my bank account," she says.

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

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Scientific finding paves way for rice genetic engineering to develop efficient water storage – InterAksyon

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Researchers at the Australian National University (ANU) have found a way to survive drought conditions 50 percent longer by leveraging chloroplasts to initiate the conservation of water by causing plant pores or stoma to close as temperatures rise.

The plant pumps water into the leaves, which, in turn, absorb carbon dioxide. Chlorophyll, water, carbon dioxide, and other food producing substances are available inside the chloroplast, and the entire process of photosynthesis takes place in the chloroplast.

Scientists observed that chloroplasts can sense drought stress and always activate a chemical that closes the plants pores or stomata to conserve water.

This finding was revealed in the article written by lead author Dr. Wannarat Pornsiriwong and others entitled A chloroplast retrograde signal, 3-phosphoadenosine5-phosphate, acts as a secondary messenger in abscisic acid signaling in stomatal closure and germination, in the peer-reviewed journal eLife on March 21, 2017.

The research team, led by Dr. Wannarat Pornsiriwong, Dr. Gonzalo Estavillo, Dr. Kai Chan and Dr. Barry Pogson from the Australian National University (ANU) Research School of Biology, found that chloroplasts, better known for their role in photosynthesis, play a role in regulating plant response during heat stress.

Chloroplasts are actually capable of sensing drought stress and telling the leaves to shut up and prevent water from being lost during drought stress, Dr. Pogson added.

So the chloroplasts are actually helping the plants to prevent losing too much water. We know how the drought alarm actually calls for help and we know how help comes in the form of closing pores on the leaves, he stressed.

Boosting the levels of this chloroplast signal also restores tolerance in drought-sensitive plants and extended their drought survival by about 50 per cent, Dr. Chan added.

By increasing the activity of the chloroplasts or stimulating this chemical signal in another way, plants could store water for a longer period and survive despite higher temperatures.

Through this specific function of chloroplasts, plant geneticists may employ genetic modification (GM) to develop plants with more spores or crops that have roots and stems big enough to store water the way pineapple, watermelon and turnips do.

This finding is significant as climatologists have predicted more intense global warming that could reduce rice yields.

The finding would also boost efforts by biotechnologists and plant breeders to coax rice varieties to use their chloroplasts efficiently to help the plants store water and thus support a bigger volume of rice grains in a panicle.

This basic scientific research has the potential to improve farming productivity in countries that suffer from drought stress, Dr. Pogson said.

If we can even alleviate drought stress a little, it would have a significant impact on our farmers and the economy, he added.

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Biotech Gene Therapy Names Juno, Kite, And bluebird bio Still Have Room To Run – Seeking Alpha

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Author's note: The following consists of excerpts from my 45-page May 30 report on bluebird bio (NASDAQ:BLUE), Kite Pharma (NASDAQ:KITE), and Juno Therapeutics (NASDAQ:JUNO). The focus in this submission is BLUE. Please check out my Seeking Alpha profile for important information. Global Gene Therapy Market

The gene therapy market is gaining popularity in the global medical community. The advent of advanced techniques for gene transfer has enabled the use of gene therapy for various new applications. Although it is still at an infant stage, its promise has led to a range of bullish estimates. Market research firm BCC Research forecasts the global market for DNA vaccines to grow at a 54.8% CAGR to $2.7 bln by 2019, while two other observers - Roots Analysis and Research and Markets - predict the gene therapy market as a whole to reach ~$11 bln by 2025. Another report from market intelligence firm Transparency Market Research forecasts that the global stem cell market will grow at a CAGR of > 20% in the next few years and said there is a rich pipeline of more than 500 cell and gene therapy products, which will drive significant capacity as the pipeline matures and progresses to commercial supply.

Key factors driving market growth include demand for novel and efficient therapies to treat cancers and other indications with high unmet needs. Other market drivers include completion of the human genome project, rising incidence and prevalence of cancers and other critical diseases, and the prospective launch of gene therapies in major global markets.

Most gene therapy products are in the pre-clinical or clinical research stage. To-date, there are only five marketed drugs, namely Glybera, Neovasculogen, Gendicine, Rexin-G, and Oncorine. However, these products constitute very little revenue for the gene therapy market. Most revenue for the gene therapy market is generated from products used in clinical trials.

Need for gene therapy: It is estimated that approximately 5% of the global population suffers from a rare disease, and half of the global population affected by rare diseases are children, making rare disease treatment a concern for children across the globe. There are about 7,000 known rare diseases that comprise the most complex healthcare challenges for researchers and health professionals - with most being difficult to diagnose due to heterogeneity in disease epidemiology.

Rare diseases that affect 200,000 people in the US (as per the FDA definition) and a similar percentage in Europe are typically genetic in nature and, thus, present a significant unmet need for potential regimes in the market.

As per World Health Organization, 80% of rare diseases are caused due to genetic abnormality and are inherited for generations. Approximately 5% of the rare diseases have a treatment, and most of the current therapeutic approaches include gene therapy and cell therapy. A significant gap between demand and supply of rare disease drugs is expected to create a massive opportunity for manufacturers and researchers in the area of rare disease treatment.

How Does Gene Therapy Work?

Advances in biotechnology have brought gene therapy to the forefront of medical research. The prelude to successful gene therapy, the efficient transfer and expression of a variety of human gene into target cells, has already been accomplished in several systems.

Gene therapy may be defined as the introduction of genetic material into defective cells for a therapeutic purpose. While gene therapy holds great potential as an effective means for selective targeting and treatment of disease, the field has seen relatively slow progress in the development of effective clinical protocols. Although identifying genetic factors that cause a physiological defect is straightforward, successful targeted correction techniques are proving continually elusive. Hence, safe methods have been devised to do this (using several viral and no-viral vectors). Two main approaches have emerged in-vivo modification and ex-vivo modification. Retrovirus, adenovirus, adeno-associated virus are suitable for gene therapeutic approaches; these are based on permanent expression of the therapeutic gene. Non-viral vectors are far less efficient than viral vectors, but they have advantages due to their low immunogenicity and large capacity for therapeutic DNA.

Viral Vectors: These are virus-based vectors. Examples include retrovirus vector, adeno virus vector system, adeno associated virus vector, and herpes simplex virus. Extensive research is being conducted on the various viral vectors used in gene delivery. Non-viral vectors: Examples of non-viral vector systems include pure DNA constructs, lipoplexes, DNA molecular conjugates, and human artificial chromosomes. Owing to the following advantages, non-viral vectors have gained significant importance in the past few years as they are less immune-toxic, there is risk-free repeat administration and relative ease of large-scale production.

A major disadvantage is that the corrected gene needs to be unloaded into the target cell, and the vector has to be made to reach the required treatment site.

Gene therapy has transitioned from the conceptual, technology-driven, laboratory research, to clinical trial stages for a wide variety of diseases. In addition to curing genetic disorders such as Hemophilia, Chronic Granulomatous Disorder, and Severe Combined Immune Deficiency (ADA-SCID), it is also being tested to cure acquired diseases such as cancer, neurodegenerative diseases, influenza, and hepatitis.

Gene therapy is not limited to any particular disease. It is proving to be a promising treatment for rare diseases such as X-linked adrenoleukodystrophy. The therapy has proved effective in research conducted for the following diseases:

Fat Metabolism Disorder: Gene therapy is used to correct rare genetic diseases caused due to lipoprotein lipase deficiency. This deficiency leads to fat molecules clogging the bloodstream. An adeno-associated virus vector is used to deliver the corrected copy of the LPL to the muscle cells. This corrected copy prevents excess accumulation of fat in the blood by breaking down the fat molecules. In 2012, the EU approved Glybera, the first viral gene therapy treatment for LPLD, manufactured by uniQure (NASDAQ:QURE). Glybera is likely to be approved for the American market by 2018.

Adenosine Deaminase Deficiency: Gene therapy has successfully been used to treat another inherited immune disorder - ADA deficiency. More importantly, none of the patients undergoing this treatment developed any other disorder. The retroviral vector is used in multiple small trials to deliver the functional copy of the ADA gene. Primarily, all the patients involved in these trials did not require any injection of ADA enzyme as their immune functions had immensely improved.

Severe Combined Immune Deficiency: A lot of documented work is already available regarding treating this immunodeficiency with gene therapy; however, clinical trials have not shown promising results. The viral vectors used during the trials triggered leukemia in patients. Since then, focus of the research and trials has been on preparing new vectors that are safe and do not cause cancer.

Hemophilia: Patients with hemophilia suffer excessive blood loss as the blood clotting protein (Factor IX) is absent. Researchers have successfully inserted the missing gene in the liver cells using an adeno-associated viral vector. After undergoing this treatment, patients experienced less bleeding as their body was able to create some of the Factor IX protein.

Cystic Fibrosis (CF): CF is a chronic lung disease caused due to a faulty CFTR gene. Genes are injected into cells using a virus. Recent studies also include testing the cationic liposome (a fatty container) to deliver DNA to the faulty CFTR gene, thus making the use of the non-viral gene carrier more successful. Phase II trials using this therapy were published in early 2015, which promised a novel therapeutic approach to CF.

-thalassemia: Clinical trials on gene therapy for -thalassemia (the faulty beta-globin gene, which codes for an oxygen-carrying protein in RBC) can be tracked back to 2007. Blood stem cells were taken from the patients bone marrow, and a retrovirus was used to transfer a working copy of the faulty gene. The modified stem cells were re-injected into the body to supply functional red blood cells. This treatment, once conducted, lasted over seven years, with the patient not undergoing blood transfusion during this time.

Hereditary Blindness: Currently, gene therapy is being tested to treat degenerative form of inherited blindness, where patients lose light-sensing cells in their eyes over time. Experimental data suggests that the animal models of a mouse, rat, and dog show slow or even reverse vision loss using gene therapy. The most important advantage associated with gene therapy for eye disorders is that AAV (adeno-associated virus) cannot shift from the eye to other body parts and hence does not cause an immune reaction.

Parkinson's Disease: Patients with Parkinson's disease lose the ability to control their movement as their brain cells stop producing the dopamine molecule used for signaling. A small group of patients showed improved muscle control when a small area of their brain was treated with a retroviral vector that contained dopamine-producing genes.

This is because cancer genetics is a novel treatment method, marked by high R&D costs. The therapy targets diseases with high unmet needs; this has been the driving force behind academic research laboratories, small biotech firms, and large pharmaceutical companies. The therapy is of short-duration treatment or mostly one-time treatment customized to individuals and often in small patient populations.

bluebird bio (BLUE) is a clinical-stage biotechnology company that focuses on developing transformative gene therapies for severe genetic diseases and cancer. Its product candidates include Lenti-D, which is in Phase II/III clinical studies for the treatment of cerebral adrenoleukodystrophy - a rare hereditary neurological disorder - and LentiGlobin, which is in four clinical studies for the treatment of transfusion-dependent beta-thalassemia and severe sickle cell disease. The companys lead product candidate is bb2121, a chimeric antigen receptor (CAR) T cell receptor (TCR) product candidate that is in Phase I trial for the treatment of relapsed/refractory multiple myeloma.

The company's gene therapy platform is based on viral vectors that utilize a non-replicating version of the Human Immunodeficiency Virus Type 1 (HIV-1). Its lentiviral vectors are used to introduce a functional copy of a gene to the patient's own isolated hematopoietic stem cells (HSCs) in the case of its LentiGlobin and Lenti-D product candidates, or the patient's own isolated white blood cells, which include T cells, in the case of its bb2121 product candidate.

BLUE has a strategic collaboration with Celgene Corporation (NASDAQ:CELG) to discover, develop, and commercialize disease-altering gene therapies in oncology; with Kite Pharma (KITE) to develop and commercialize second generation T cell receptor product candidates against an antigen related to certain cancers associated with the human papilloma virus; and with Medigene (Germany) for the research and development of (TCR) product candidates directed against approximately four antigens for the treatment of cancer indications. Founded in 1992 and headquartered in Cambridge, Massachusetts, the company was formerly known as Genetix Pharmaceuticals and later changed its name to bluebird bio (Incorporated) in September 2010.

With its lentiviral-based gene therapies, T cell immunotherapy expertise, and gene-editing capabilities, BLUE has built an integrated product platform with broad potential application for severe genetic diseases and cancer. BLUE's approach to gene therapy is based on viral vectors that utilize the Human Immunodeficiency Virus Type 1 or HIV-1. The HIV-1 vector is stripped off all the components that allow it to self-replicate and infect additional cells. HIV-1 is part of the lentivirus family of viruses. The vectors are used to introduce a modified copy of a gene from the patients own blood stem cells called hematopoietic stem cells (HSC), which reside in the patient's bone marrow. HSCs divide cells that allow for sustained expression of the modified gene.

Lenti-D

bluebird is developing the Lenti-D product candidate to treat patients with cerebral adrenoleukodystrophy.

Adrenoleukodystrophy is a rare X-linked, metabolic disorder caused by mutations in the ABCD1 gene, which results in a deficiency in adrenoleukodystrophy protein, or ALDP, and subsequent accumulation of very long-chain fatty acids. Symptoms of CALD usually occur in early childhood and progress rapidly if untreated, leading to severe loss of neurological function and eventual death.

Completed non-interventional retrospective study (the ALD-101 Study)

CALD is a rare disease, and data on the natural history of the disease, as well as the efficacy and safety profile of allogeneic HSCT, is limited in scientific literature. To properly design clinical studies of Lenti-D and interpret the efficacy and safety results thereof, at the recommendation of the FDA, bluebird performed a non-interventional retrospective data collection study to assess the natural course of the disease in CALD patients that were left untreated in comparison with the efficacy and safety data obtained from patients that received allogeneic HSCT.

For this study, data was collected from four US sites and one French site on a total of 137 subjects, 72 of whom were untreated, and 65 were treated with allogeneic HSCT.

Starbeam Study (ALD-102) - Phase II/III clinical study in subjects with CALD

The company is currently conducting a Phase II/III clinical study of Lenti-D product candidate in the US, referred to as the Starbeam Study (ALD-102), to examine the safety and efficacy of Lenti-D product candidate in subjects with CALD. The study was fully enrolled in May 2015; however, in December 2016, the company amended the protocol for this study to enroll up to an additional eight subjects in an effort to enable the first manufacture of Lenti-D product candidate in Europe and the subsequent treatment of subjects in Europe, and to bolster the overall clinical data package for potential future regulatory filings in the US and Europe. It intended to begin treating the additional patients in early 2017.

The ALD-103 (observational) study

bluebird is also conducting the ALD-103 study, an observational study of subjects with CALD treated by allogeneic HSCT. This study is ongoing and is designed to collect efficacy and safety outcomes data in subjects who have undergone allogeneic HSCT over a period that is contemporary with the Starbeam study.

Lentiglobin Product

Transfusion-dependent -thalassemia (TDT)

-thalassemia is a rare hereditary blood disorder caused by a mutation in the -globin gene, resulting in the production of defective red blood cells, or RBCs. Genetic mutations cause the absence or reduced production of beta chains of hemoglobin, or -globin, preventing the proper formation of hemoglobin A, which normally accounts for more than 95% of the hemoglobin in the blood of adults.

Limitations of current treatment options

In geographies where treatment is available, patients with TDT receive chronic blood transfusion regimens. These regimens consist of regular infusions with units of packed RBC, or pRBC, usually every three to five weeks, to maintain hemoglobin levels and control symptoms of the disease.

The only potentially curative therapy for -thalassemia today is allogeneic HSCT. However, complications of allogeneic HSCT include risk of engraftment failure in unrelated human-leukocyte-antigen, or HLA, matched patients, risk of life-threatening infection, and risk of GVHD - a common complication in which donor immune cells (white blood cells in the graft) recognize the cells of the recipient (the host) as foreign and attack them. As a result of these challenges, allogeneic HSCT can lead to significantly high mortality rates, particularly in patients treated with cells from a donor who is not a matched sibling and in older patients. Overall, TDT remains a devastating disease with an unmet medical need.

The Northstar Study (HGB-204) Phase I/II clinical study in subjects with TDT

The Northstar study is a single-dose, open-label, non-randomized, multi-site Phase I/II clinical study in the US, Australia, and Thailand to evaluate the safety and efficacy of the LentiGlobin product candidate in increasing hemoglobin production and eliminating or reducing transfusion dependence following treatment. In March 2014, the first subject with TDT was treated in this study, and, in May 2016, the study was fully enrolled.

The study enrolled 18 adults and adolescents. To be eligible for enrollment, subjects had to be between 12 and 35 years of age, with a diagnosis of TDT, and received at least 100 mL/kg/year of pRBCs or more than or equal to eight transfusions of pRBCs per year in each of the two years preceding enrollment.

Efficacy will be evaluated primarily by the production of 2.0 g/dL of hemoglobin A containing A-T87Q-globin for the six-month period between 18 and 24 months, post transplants. Exploratory efficacy endpoints include RBC transfusion requirements (measured in milliliters per kilogram) per month and per year, post transplants.

The HGB-205 study Phase I/II clinical study in subjects with TDT or with severe SCD

bluebird is conducting the HGB-205 study, a Phase I/II clinical study, in France to study the safety and efficacy of its LentiGlobin product candidate in the treatment of subjects with TDT and of subjects with severe SCD. In December 2013, the company said that the first subject with TDT had been treated in this study; in October 2014, bluebird declared that the first subject with severe SCD had been treated in this study. By February 2017, the study had been fully enrolled.

bluebird is conducting HGB-206 multi-site Phase I clinical study in the US to evaluate the safety and efficacy of its LentiGlobin product candidate for the treatment of subjects with severe SCD. In October 2016, the company amended the protocol of its HGB-206 study to expand enrollment and incorporate several process changes, including updated drug product manufacturing process. Enrollment had begun under this amended protocol, and in February 2017, the company treated the first subject under this amended protocol.

The Northstar-2 Study (HGB-207) Phase III study in subjects with TDT and a non-0/0 genotype

The Northstar-2 study is an ongoing single-dose, open-label, non-randomized, international, multi-site Phase III clinical study to evaluate the safety and efficacy of the LentiGlobin product candidate to treat subjects with TDT and non-0/0 genotype. Approximately 23 subjects will be enrolled in the study, consisting of at least 15 adolescent and adult subjects between 12 and 50 years of age at enrollment and at least eight pediatric subjects less than 12 years of age at enrollment. In December 2016, the first subject had received treatment with the LentiGlobin product candidate.

The planned Northstar-3 Study (HGB-212) Phase III Study for TDT in subjects with TDT and a 0/ 0 genotype

The company plans the initiation of HGB-212, a Phase III clinical study of LentiGlobin in patients with TDT and the 0/0 genotype in 2H FY2017.

bluebird expects to enroll up to 15 adult, adolescent, and pediatric subjects. The company anticipates that the primary endpoint of the Northstar-3 study will be transfusion reduction, which is defined as a demonstration of a reduction in the volume of pRBC transfusion requirements in the post-treatment time period of 12-24 months, compared with the average annual transfusion requirement in the 24 months prior to enrollment.

Sickle Cell Disease

SCD is an inherited disease that is caused by a mutation in the -globin gene; this results in sickle-shaped red blood cells. The disease is characterized by anemia, vaso-occlusive crisis, infections, stroke, overall poor quality of life, and, sometimes, early death. Where adequate medical care is available, common treatments for patients with SCD largely revolves around the management and prevention of acute sickling episodes. Chronic management may include hydroxyurea and, in certain cases, chronic transfusions. Given the limitations of these treatments, there is no effective long-term treatment. The only advanced therapy for SCD is allogeneic hematopoietic stem cell transplantation (HSCT). Complications of allogeneic HSCT include a significant risk of treatment-related mortality, graft failure, graft-versus-host disease, and opportunistic infections - particularly in patients who undergo non-sibling-matched allogeneic HSCT.

In March 2017, bluebird announced the Publication of the Case Study on the First Patient with Severe Sickle Cell Disease Treated with Gene Therapy in The New England Journal of Medicine. Patient 1204, a male patient with S/S genotype, was enrolled in May 2014 at 13 years of age into the HGB-205 clinical study. The patient underwent a regular transfusion regimen for four years prior to this study. Over 15 months since transplant, no SCD-related clinical events or hospitalizations occurred - contrasting favorably with the period before the patient began regular transfusions. All medications were discontinued, including pain medication.

The successful outcome in Patient 1204 demonstrates the promise of treatment with LentiGlobin gene therapy in patients with severe SCD and serves as a guide to optimize outcomes in future patients.

Celgene Collaboration

In March 2013, BLUE entered into a strategic collaboration with Celgene to advance gene therapy in oncology (cancer), which was amended and restated in June 2015, and amended again in February 2016. The multi-year research and development collaboration focused on applying BLUEs expertise in gene therapy technology to CAR T cell-based therapies, to target and destroy cancer cells. The collaboration now focuses exclusively on anti- B-cell maturation antigen BCMA product candidates for a new three-year term.

Under the terms of the Amended Collaboration Agreement, for up to two product candidates selected for development under the collaboration, BLUE is responsible for conducting and funding all research and development activities performed up through completion of the initial Phase I clinical study of such a product candidate.

In February 2016, Celgene exercised its option to obtain an exclusive worldwide license to develop and commercialize bb2121, the first product candidate under the Amended Collaboration Agreement, and paid the associated ($10 million) option fee. BLUE will share equally in all costs related to developing, commercializing, and manufacturing the product candidate within the US, if it elects to co-develop and co-promote bb2121 with Celgene. In case BLUE does not exercise its option to co-develop and co-promote bb2121, it will receive an additional fee (of $10 million).

Summary

All three names in my May 30, 2017, (45-page) report are from the same space, and I highly recommend taking a look at the entire report before making an investment decision. It is available on request.

This industry is in its infancy - most trials are only in Phase I or Phase II. The companies do not have earnings yet, and that makes them difficult to value today. In my opinion, the upside here is significant, but you may have to hold on to these names for a few years in order to realize that upside, because today an argument can be made that the stocks have gotten a little bit ahead of themselves.

I am keeping my Buy recommendation on Juno (unchanged), and I am keeping my Hold recommendation on Kite (unchanged). There are currently seven institutions (each) with stakes of at least 250 million dollars in BLUE. There are nine institutions (each) with stakes of at least 175 million dollars in KITE. With JUNO, the institutional ownership is much lower - many institutions probably got shaken out following deaths on the Juno trials last year. In my opinion, the market over-reacted to those deaths. In fact, the shares have already bounced significantly since the low from last year following that market over-reaction (and insiders bought $500,000 worth of Juno shares recently).

I went in and out of KITE twice in the last couple of years and locked in gains of 35% both times. I most recently exited KITE at $87 a share on March 13.

The 52-week high on BLUE is $124, and the all-time high is $194.

There are 8,000,000 shares short, and that is more than 10X the average daily volume.

My recommendation is to allocate 3% portfolio weight to this industry: 1.5% to BLUE, 0.75% to KITE, and 0.75% to JUNO.

I remember an analyst (many years ago) on CNBC defending his Sell recommendation on Amazon (NASDAQ:AMZN). It was trading at $100/share at the time. He defended the Sell rating by saying it loses money on every book it sells. AMZN recently hit $1,000 today. The lesson here is do not be afraid to invest in names with multi-billion market caps that are without EPS today. With KITE, BLUE, and JUNO, you must look out 3-5 years.

Sources

Why bluebird bio Stock Surged 20.7% Higher in January

Risks - Mayo Clinic

bluebird bio Reports First Quarter 2017 Financial Results and Recent Operational Progress

bluebird bio Announces Publication of Case Study on First Patient with Severe Sickle Cell Disease Treated with Gene Therapy in The New England Journal of Medicine

Annual Report 10-K

Quarterly Report 10-Q

Press Release | Investor Relations | Bluebird Bio

Kite Pharma Posts Q1 Loss, Reveals CAR-T Patient Death

SHAREHOLDER ALERT: Bronstein, Gewirtz & Grossman, LLC Announces Investigation of Kite Pharma, Inc. (KITE)

KITE INVESTOR ALERT: Faruqi & Faruqi, LLP Encourages Investors Who Suffered Losses Exceeding $100,000 Investing In Kite Pharma, Inc. To Contact The Firm

SHAREHOLDER ALERT: Levi & Korsinsky, LLP Announces the Commencement of an Investigation Involving Possible Securities Fraud Violations by the Board of Directors of Kite Pharma, Inc.

Kite Investors See An Uncomfortable Parallel With Juno

Kite Pharma: History In The Making?

Kite Pharma: Still Time To Get In Ahead Of Lead Oncology Treatment Approval

Here's What's Dragging Kite Pharma Inc. Down Today -- The Motley Fool

Global Gene Therapy Market to Reach US$316 Million by 2015, According to a New Report by Global Industry Analysts, Inc.

Gene Therapy Market information, Current Trends Analysis, Major Players and Forecast 2024

Gene Therapies Market will generate $204m in 2020

Cancer Gene Therapy Market size to exceed $4.3bn by 2024

Could gene therapy become biotech's growth driver in 2017?

Cell Therapy 2016 - Year in Review (part 1)

Cancer Gene Therapy Market Size, Share, Industry Report 2024

Gene Therapy Market information, Current Trends Analysis, Major Players and Forecast 2024

Gene Therapy Clinical Trials Worldwide

Human Gene Therapy (PDF)

Aranca Report - GENE THERAPY: Advanced Treatments for a New Era

International Journal Of Pharma Sciences and Research (IJPSR) - Gene therapy: Current status and future perspectives Gene Therapy Institute for Clinical and Economic Review

Read more here:

Biotech Gene Therapy Names Juno, Kite, And bluebird bio Still Have Room To Run - Seeking Alpha

Massachusetts girl may be among first-ever to receive gene therapy for rare disease after parents push for cure – Fox News

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An 11-year-old girl in Massachusetts is at the forefront of a disease so rare, that it is believed only 22 people worldwide have been diagnosed with it. Talia Duff, who was born with Down syndrome and later diagnosed with Charcot-Marie-Tooth Neuropathy Type 4J (CMT4J), is slated to be among the first to enroll in a clinical trial that is awaiting FDA approval after her parents refused to watch her fall victim to the degenerative genetic disease.

Its a horrible feeling to go to a doctor and be told that theres nothing that can be done that the best you can do is try to make your child comfortable and enjoy the time you have together, John Duff, Talias dad, told PEOPLE. I learned to cherish moments in life that I would otherwise take for granted.

PREGNANT MOM DELAYS CANCER TREATMENT TO PROTECT UNBORN TWINS

The Duff family, which includes mom Jocelyn and older sister Teaghan, had noticed Talia struggling to crawl at around age four, and a regression in a number of other motor skills that at the time was attributed to her Down syndrome, and later to Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP). Subsequent failed therapies and a diagnoses of osteoporosis due to prescribed steroids caused her parents to push for another diagnosis at Boston Childrens Hospital, according to a post on the familys Cure CMT4J Foundation website.

We learned that Talia did not in fact have CIDP but instead had an extremely rare form of Charcot Marie Tooth Disease a degenerative, genetic disease called CMT4J, the post read.

MEREDITH VIEIRA SPEAKS OUT ON 'SILENT' BONE DISEASE

The family learned the disease would slowly take over Talias body like a form of amyotrophic lateral sclerosis (ALS), eventually causing paralysis and robbing her of her ability to breathe. In the two years since her diagnosis, Talia lost her ability walk or even raise her arms.

We were supposed to sit back and watch our child live her life in reverse, the post on Cure CMT4J Foundation read. I decided not to accept this. I stayed up late nights pouring over scientific papers and booked appointments with the top CMT doctors in the world. We traveled to the University of Iowa and then Vanderbilt University, where we met Dr. Jun Li.

CHRISTIAN ROCKER RAISING FUNDS FOR BANDMATE WHOSE WIFE DIED HOURS AFTER CHILDBIRTH

It was at the meeting with Li that the Duffs learned of a genetic therapy that could potentially cure Talias disease, but that it was eight-to-ten years away from production. Knowing that time was of the essence for Talia, Jocelyn began connecting with other parent advocates and the family started the Cure CMT4J Foundation with a goal of raising $1 million for research. She met with a team of eight researchers in Maryland, who concluded that the gene therapy would have a lasting effect on Talia, and they are now working to attain proof of concept approval from the FDA, PEOPLE reported.

With approval expected to come later this summer, Jocelyn is prepared to then push for approval of a human clinical trial, with Talia expected to be among the first to receive the gene therapy intravenously.

We feel hope now, Jocelyn told PEOPLE. People have said to me, This is a lot of work for you, and my response is, Hey, you would do this for your child, too. I simply cant stand by and do nothing.

Here is the original post:

Massachusetts girl may be among first-ever to receive gene therapy for rare disease after parents push for cure - Fox News

New technique enables safer gene-editing therapy using CRISPR – Phys.Org

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June 29, 2017 A CRISPR protein targets specific sections of DNA and cuts them. Scientists have turned this natural defense mechanism in bacteria into a tool for gene editing. Credit: Jenna Luecke and David Steadman/Univ. of Texas at Austin

Scientists from The University of Texas at Austin took an important step toward safer gene-editing cures for life-threatening disorders, from cancer to HIV to Huntington's disease, by developing a technique that can spot editing mistakes a popular tool known as CRISPR makes to an individual's genome. The research appears today in the journal Cell.

Scientists already use the gene-editing tool called CRISPR to edit the genetic code of nearly any organism. CRISPR-based gene editing will have an enormous impact on human health. More than a dozen clinical trials employing CRISPR on human cells are reportedly already underway, but the approach is imperfect. In theory, gene-editing should work much like fixing a recurring typo in a document with an auto-correct feature, but CRISPR moleculesproteins that find and edit genessometimes target the wrong genes, acting more like an auto-correct feature that turns correctly spelled words into typos. Editing the wrong gene could create new problems, such as causing healthy cells to become cancerous.

The UT Austin team developed a way to rapidly test a CRISPR molecule across a person's entire genome to foresee other DNA segments it might interact with besides its target. This new method, they say, represents a significant step toward helping doctors tailor gene therapies to individual patients, ensuring safety and effectiveness.

"You and I differ in about 1 million spots in our genetic code," says Ilya Finkelstein, an assistant professor in the Department of Molecular Biosciences at UT Austin and the project's principal investigator. "Because of this genetic diversity, human gene editing will always be a custom-tailored therapy."

The researchers took a DIY approach to developing the equipment and software for their technique, using existing laboratory technology to develop CHAMP, or Chip Hybridized Affinity Mapping Platform. The heart of the test is a standard next generation genome sequencing chip already widely used in research and medicine. Two other key elementsdesigns for a 3-D printed mount that holds the chip under a microscope and software the team developed for analyzing the resultsare open source. As a result, other researchers can easily replicate the technique in experiments involving CRISPR.

"If we're going to use CRISPR to improve peoples' health, we need to make sure we minimize collateral damage, and this work shows a way to do that," says Stephen Jones, a postdoctoral researcher at UT Austin and one of three co-lead authors of the paper.

Andy Ellington, a professor in the Department of Molecular Biosciences and vice president for research of the Applied Research Laboratories at UT Austin, is a co-author of the paper. He says this method also illustrates the unpredictable side benefits of new technologies.

"Next generation genome sequencing was invented to read genomes, but here we've turned the technology on its head to allow us to characterize how CRISPR interacts with genomes," says Ellington. "Inventive folks like Ilya take new technologies and extend them into new realms."

This work can also help researchers predict which DNA segments a certain CRISPR molecule will interact with even before testing it on an actual genome. That's because they're uncovering the underlying rules that CRISPR molecules use to choose their targets. For example, they found that the CRISPR molecule they tested, called Cascade, pays less attention to every third letter in a DNA sequence than to the others.

"So if it were looking for the word 'shirt' and instead found the word 'short,' it might be fine with that," says Jones.

That sounds counterintuitive, but can be really useful. CRISPR originated from a natural defense in bacteria used to guard against invading viruses that evolve rapidly. A good defense sees through slight changes in the viral genetic code.

Knowing these rules will lead to better computer models for predicting which DNA segments a specific CRISPR molecule is likely to interact with. And that can save time and money in developing personalized gene therapies.

Explore further: Modifying fat content in soybean oil with the molecular scissors Cpf1

More information: Cell (2017). DOI: 10.1016/j.cell.2017.05.044 , http://www.cell.com/cell/fulltext/S0092-8674(17)30637-2

Journal reference: Cell

Provided by: University of Texas at Austin

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Worker and queen honeybees exposed to field realistic levels of neonicotinoids die sooner, reducing the health of the entire colony, a new study led by York University biologists has found.

Scientists from The University of Texas at Austin took an important step toward safer gene-editing cures for life-threatening disorders, from cancer to HIV to Huntington's disease, by developing a technique that can spot ...

If aliens sent an exploratory mission to Earth, one of the first things they'd noticeafter the fluffy white clouds and blue oceans of our water worldwould be the way vegetation grades from exuberance at the equator ...

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New technique enables safer gene-editing therapy using CRISPR - Phys.Org