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First Edition: April 24, 2017

Kaiser Health News - Mon, 04/24/2017 - 6:30am
Categories: Health Care

UVM Clinic Offers Therapies To Help Resettled Refugees Work Through Trauma

CommonHealth (WBUR) - Mon, 04/24/2017 - 5:45am
Connecting Cultures clinic, based at the University of Vermont, offers mental health treatment services to refugees struggling with tragic memories and adjusting to living in the U.S.
Categories: Health Care

Health Care In America: An Employment Bonanza And A Runaway-Cost Crisis

Kaiser Health News - Mon, 04/24/2017 - 5:05am

In many ways, the health care industry has been a great friend to the U.S. economy. Its plentiful jobs helped lift the country out of the Great Recession and, partly due to the Affordable Care Act, it now employs 1 in 9 Americans — up from 1 in 12 in 2000.

As President Donald Trump seeks to fulfill his campaign pledge to create millions more jobs, the industry would seem a promising place to turn. But the business mogul also campaigned to repeal Obamacare and lower health care costs — a potentially serious job killer. It’s a dilemma: One promise could run headlong into the other.

“The goal of increasing jobs in health care is incompatible with the goal of keeping health care affordable,” said Harvard University economist Katherine Baicker, who sees advantages in trimming the industry’s growth. “There’s a lot of evidence we can get more bang for our buck in health care. We should be aiming for a health care system that operates more efficiently and effectively. That might mean better outcomes for patients and fewer jobs.”

This story also ran in The New York Times. It can be republished for free (details).

But the country has grown increasingly dependent on the health sector to power the economy — and it will be a tough habit to break. Thirty-five percent of the nation’s job growth has come from health care since the recession hit in late 2007, the single-biggest sector for job creation.

Hiring rose even more as coverage expanded in 2014 under the health law and new federal dollars flowed in. It gave hospitals, universities and companies even more reason to invest in new facilities and staff.  Training programs sprang up to fill the growing job pool. Cities welcomed the development — and the revenue. Simply put, rising health spending has been good for some economically distressed parts of the country, many of which voted for Trump last year.

In Morgantown, W.Va., the West Virginia University health system just opened a 10-story medical tower and hired 2,000 employees last year. In Danville, Pa., the Geisinger Health System has added more than 2,200 workers since July and is trying to fill 2,000 more jobs across its 12 hospital campuses and a health plan. Out West, the University of the UCHealth system in Colorado expanded its Fort Collins hospital and is building three hospitals in the state.

In cities such as Pittsburgh, Cleveland and St. Louis, health care has replaced dying industries like coal and heavy manufacturing as a primary source of new jobs. “The industry accounts for a lot of good middle-class jobs and, in many communities, it’s the single-largest employer,” said Sam Glick, a partner at the Oliver Wyman consulting firm in San Francisco. “One of the hardest decisions for the new Trump administration is how far do they push on health care costs at the expense of jobs in health care.”

House Republicans, with backing from Trump, took the first swipe. Their American Health Care Act sought to roll back the current health law’s Medicaid expansion and cut federal subsidies for private health insurance. The GOP plan faltered in the House, but Republican lawmakers and the Trump administration are still trying to craft a replacement for Obamacare.

Neither the ACA nor the latest Republican attempt at an overhaul tackle what some industry experts and economists see as a serious underlying reason for high health care costs: a system bloated by redundancy, inefficiency and a growing number of jobs far removed from patient care.

Labor accounts for more than half of the $3.4 trillion spent on U.S. health care, and medical professionals from health aides to nurse practitioners are in high demand. But the sheer complexity of the system also has spawned jobs for legions of data-entry clerks, revenue-cycle analysts and medical billing coders who must decipher arcane rules to mine money from human ills.

For every physician, there are 16 other workers in U.S. health care. And half of those 16 are in administrative and other nonclinical roles, said Bob Kocher, a former Obama administration official who worked on the Affordable Care Act. He’s now a partner at the venture capital firm Venrock in Palo Alto, Calif.

“I find super-expensive drugs annoying and hospital market power is a big problem,” Kocher said. “But what’s driving our health insurance premiums is that we are paying the wages of a whole bunch of people who aren’t involved in the delivery of care. Hospitals keep raising their rates to pay for all of this labor.”

Take medical coders. Membership in the American Academy of Professional Coders has swelled to more than 165,000, up 10,000 in the past year alone. The average salary has risen to nearly $50,000, offering a path to the American Dream.

“The coding profession is a great opportunity for individuals seeking their first joband it’s attractive to a lot of medical professionals burned out on patient care,” said Raemarie Jimenez, a vice president at the medical coding group. “There is a lot of opportunity once you’ve got a foot in the door.”

Some of these back-office workers wage battle every day in clinics and hospitals against an army of claims administrators filling up cubicles inside insurance companies. Overseeing it all are hundreds of corporate vice presidents drawing six-figure salaries.

Administrative costs in U.S. health care are the highest in the developed world, according to a January report from the Organization for Economic Cooperation and Development. More than 8 percent of U.S. health spending is tied up in administration while the average globally is 3 percent. America spent $631 for every man, woman and child on health insurance administration for 2012 compared with $54 in Japan.

America’s huge investment in health care and related jobs hasn’t always led to better results for patients, data show. But it has provided good-paying jobs, which is why the talk of deep cuts in federal health spending has many people concerned.

Linda Gonzalez, a 31-year-old mother of two, was among the thousands of enrollment counselors hired to help sign up Americans for health insurance as Obamacare rolled out in 2014. The college graduate makes more than $40,000 a year working at an AltaMed enrollment center, tucked between a Verizon Wireless store and a nail salon on a busy street in Los Angeles.

In her cramped cubicle, families pull up chairs and sort through pay stubs and tax returns, often relying on her to sort out enrollment glitches with Medicaid. As the sole breadwinner for her two children, ages 9 and 10, she counts on this job but isn’t sure how long it will last.

“A lot of people depend on this,” she said one recent weekday. “It’s something I do worry about.”

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Categories: Health Care

Going For $1 An Ounce: The Burgeoning Trade In Mothers’ Milk

Kaiser Health News - Mon, 04/24/2017 - 5:00am

PALM SPRINGS, Calif. — Rebecca Soltes walked into a gaily decorated hospital meeting room, pushing her kids in a double stroller and carrying a soft-sided cooler filled with bags of frozen breast milk — 100 ounces of the stuff.

She dropped it on a table, and the roomful of lactation consultants and maternal health advocates from California’s Inland Empire erupted in applause.

She was donating the milk because she didn’t need it anymore. Her son, a young toddler, had recently graduated to solid food, but her freezer at home was still packed with pumped milk.

“I didn’t know what to do with it,” a harried-looking Soltes told two young staffers from the Mothers’ Milk Bank, a nonprofit group in San Jose, Calif., that provides breast milk for fragile infants in neonatal intensive care units (NICUs).

Increasing numbers of women who produce more breast milk than they need are handing it over — or selling it — for others to use. It’s a boon to fragile infants and mothers who can’t produce enough milk, but it also poses challenging ethical and public health questions.

A breast milk fair, where the milk is collected for fragile infants in neonatal intensive care units, was held in Palm Springs, Calif., in August 2016. (Heidi de Marco/California KHN)

Christina Beltran, who recently had a baby, signs up to receive more information at the Palm Springs breast milk donation fair. (Heidi de Marco/KHN)

Physicians, regulators and others ask: Should sickly, premature babies get access to this milk before healthy ones? Should women be paid for their milk — even if it might lead some to deprive their own infants? Should greater safeguards be required to ensure the safety of the supply?

The Food and Drug Administration does not require testing for donated human milk. A handful of states, including California and New York, regulate milk banks the way they do tissue banks, enforcing some safety standards, and many nonprofit milk banks screen donors.

But the FDA has expressed concern about milk-trading websites, warning consumers that the milk offered there carries an increased risk of contamination by drugs or disease, including HIV. The agency further urges mothers not to feed their infants donated milk acquired from other individuals or over the internet, also because of such safety risks.

This KHN story also ran in USA Today. It can be republished for free (details).

Some companies and medical experts wonder if even established milk banks — whose voluntary screening practices the FDA praised in 2010 — should be doing more to ensure safety. Dr. Jae Hong Kim, a neonatologist at UC-San Diego, said milk banks’ safety efforts have worked well thus far but are not error-free. “The challenge is, if you expand the operations, you increase your risk exposure,” he said.

Scott Elster, CEO of Prolacta Bioscience, a company that uses human milk to make fortifier products in its pharmaceutical-grade manufacturing facility, said he advocates a more rigorous level of screening.

“We believe that all human milk, whether it is distributed commercially, by a nonprofit or peer-to-peer network, should be tested for drugs of abuse, nicotine and other adulterants,” he said.

Milk Magic

As recently as the early 1970s, barely a fifth of American babies were breast-fed. Today, more than 80% get at least a taste of their mother’s milk, according to the federal Centers for Disease Control and Prevention. The health advantages are well-established, especially for premature infants.

“The first class I had on human milk I was blown away,” said Maryanne Perrin, a nutrition scientist at the University of North Carolina-Greensboro. “It’s Harry Potter meets Willy Wonka. It’s a magical food.”

The Food and Drug Administration does not require testing for donated human milk. A handful of states, including California and New York, regulate milk banks as they do tissue banks. (Heidi de Marco/KHN)

Some breast-feeding enthusiasts refer to human milk as “liquid gold.” At times, it seems as though everyone wants the stuff — from nonprofits like Mothers’ Milk Bank, to high-tech pharmaceutical companies that concentrate it into premium medical products, to your neighbor who might just want a bit more to supplement her baby’s diet.

Each year, new human milk banks open and new milk-focused companies are launched.

No one knows exactly how much of this excess milk is donated or sold, but the volume is increasing. Pauline Sakamoto, executive director of the Mothers’ Milk Bank and former president of the Human Milk Banking Association of North America, an association of nonprofit milk banks in the U.S. and Canada, said her organization’s affiliated banks distributed about 4.4 million ounces of human milk to hospitals last year, up from less than half that amount as recently as five years ago. When Sakamoto became president of  the organization in 2014, it had 18 milk banks. Now it has more than 30 open or planned.

To Profit Or Not To Profit?

The Mothers’ Milk Bank workers from San Jose traveled nearly 450 miles last year for donation drives in the southern part of the state, including the one at the Desert Regional Medical Center in Palm Springs where they applauded Soltes. The bank collects and pasteurizes donated human milk and provides it at cost to NICUs throughout California.

Over the week, workers planned to conduct risk screenings, including blood testing for HIV and other diseases, on mothers like Soltes. They also planned to ask the women’s doctors — and their babies’ doctors — to approve the donations. The team expected to collect 7,542 ounces of pumped breast milk — enough to provide more than 30,000 feedings for premature infants in NICUs.

“Right now, we have a consistent flow of milk coming in,” said Leah Carig, donor coordinator at the San Jose-based bank. “In the past, we’ve had to put out [e-mail] blasts” to increase supply.

For-profit breast milk operations are expanding, too. Elster’s company, Prolacta Bioscience, stocks warehouse-like freezers full of human milk.

Based in City of Industry, Calif., it purchases the milk from women for $1 per ounce. The company uses it to make fortifiers that are added to a mother’s or donor’s milk to deliver extra calories, proteins and minerals to premature babies.

The products are expensive, at $200 to $300 for a one-day supply. But they win praise from NICU physicians like Kim, because they can replace fortifiers made of cow’s milk, which are known to increase the risk of necrotizing enterocolitis and sepsis.

Beyond the NICU and the gates of industry, informal internet-based sites, with names like Only the Breast and Eats on Feets, also appear to be booming. One report estimated that the number of online milk transactions in the U.S. soared from 22,000 in 2012 to 55,000 in 2015.

Some milk-sharing networks are run by mothers who sell their milk, while others give it away.

Mandy Lindberg, a board member of the Inland Empire Breastfeeding Coalition, has experience with both formal and informal donation networks. She said that women often opt to donate among themselves because they want to help friends or neighbors who don’t have enough milk for their babies.

“It’s nice to put a face with the name,” Lindberg said.

Research shows there’s some risk with milk that changes hands on informal sites, however. In 2015, a team of researchers who purchased breast milk on the open market reported in the journal Pediatrics that about 10 percent of samples contained cow’s milk, which could have been added by the sellers to increase volume and thus the size of the payment. The same team had reported in 2013 that milk purchased online was frequently contaminated by pathogenic bacteria.

Kim Updegrove, executive director of the nonprofit Mothers’ Milk Bank at Austin, in Texas, says the FDA should regulate informal milk-sharing, ideally requiring all milk to go through a milk bank focused on distributing it according to the greatest medical need. This, she believes, would help make the practice safer and ensure that the sickest babies were given priority.

Updegrove and others fear that if financial gain were to become the dominant factor in distribution of human milk, supplies could be siphoned away from the sickest NICU babies. Poor mothers might sell their milk instead of giving it to their own children, these critics said.

Women involved in sharing networks don’t always understand the mission and practices of nonprofit milk banks, Perrin reported with colleagues in a 2016 paper that appeared in the Journal of Human Lactation. Better education might encourage more to donate for NICU use, she suggested.

She said that when she started her research, she thought of human milk as a “scarce resource.” “But I’ve talked to women who have shared 9,600 ounces of milk. Some have freezers full,” she said. “I think it’s a distribution problem, and not a supply problem.”

The entire concept of breast milk banking — of any type — was new to Soltes. The La Quinta, Calif., mother said that when other members of her breast-feeding group had more milk than they could use, they didn’t know what to do with it. She learned about the milk drive by doing a Google search online.

“I just happened to find this event,” she said. “I thought, wow — I’d rather do this than throw it all out.”

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Categories: Health Care

A Spoonful Of Kids’ Medicine Makes The Profits Go Up

Kaiser Health News - Mon, 04/24/2017 - 5:00am

When prescribing medications, caring for children poses a particular challenge. They’re not just little adults. Their still-developing brains and bodies metabolize drugs differently, and what works for grown-ups can yield radically different — and sometimes dangerous — results in kids.

And now, even as high drug prices make headlines, the challenge of getting sick children the kind of medication they can take and tolerate — often by creating liquid formulations of drugs that are already on the market — is seen by some companies as a lucrative opportunity.

It is part of a pattern in which patent laws and government incentives — meant to encourage development of less-profitable drugs — enable some companies to get a leg up in the market and set high prices. The Best Pharmaceuticals for Children Act, for instance, allows for delaying the approval of competing generics if companies test their drugs in children. And the Pediatric Research Equity Act requires more companies to have pediatric-focused drugs clinically assessed in kids. These laws have spurred companies to do more in terms of testing and developing pediatric medicines. The companies can market the drugs without facing competition for a longer period of time. And as a result, the treatments cost exponentially more.

This KHN story also ran in The Washington Post. It can be republished for free (details).

Critics say the higher price tags are out of line with the cost of developing kid-friendly remedies.

“The only R&D, if you will, that went into making these liquid is finding a solution to dissolve them in, and making sure it was stable and well-absorbed,” said Thomas Welch, who leads the pediatrics department at Upstate Medical University in Syracuse, N.Y. He co-authored a letter in the New England Journal of Medicine assessing the price increase for two of these drugs, which treat hypertension and heart conditions in children.

For Carissa Baker-Smith, a pediatric cardiologist at the University of Maryland, those drugs — Qbrelis, approved last July, and Epaned, approved in 2013 — could have been a godsend. They presented an alternative to their long-available generic adult versions, which, because of their strength, meant she usually referred her young patients to compounding pharmacies for liquid formulations, a step, she said, that requires “a bit of blind trust.”

At these pharmacies, licensed specialists use approved medications to create formulations for people whose needs are not met commercially.

On the plus side, these two drugs not only meet medical needs of Baker-Smith’s patients, but they went through the Food and Drug Administration’s rigorous approval process and are produced under the agency’s manufacturing-practice regulations, which do not apply to compounding pharmacies.

But their cost yields a different kind of angst.

Liquids pose “a financial burden to families,” Baker-Smith said. She added that parents frequently ask when their child is finally ready for the less pricey tablet.

“My patients need heart transplants, or have other issues,” she said. “That’s a huge cost.”

Seizing An Opportunity

How so? Qbrelis costs 775 times as much as the generic tablet, while Epaned is 21 times costlier than the off-brand, according to Welch’s letter.

Here’s another real-world comparison. If a compound pharmacy filled a prescription for a liquid formulation using the generic liquid Lisinopril — the active ingredient in Qbrelis — it would cost up to $20 a month. The patented liquid, though, could yield a monthly bill of $500 to $1,000, depending on how large a dose the child needs, estimated Erin Fox, an adjunct associate professor of pharmacotherapy at the University of Utah. For Epaned, a monthly regimen could cost $500 to $2,000; a compound pharmacy’s formulation of a comparable generic liquid would cost $20 to $80, she said.

The two drugs are both manufactured by Colorado-based Silvergate Pharmaceuticals. By creating liquid solutions of these drugs that can be dispensed in smaller doses, Silvergate was able to obtain patents for each. It controls the market on them until at least 2030, according to the FDA’s Orange Book, a comprehensive roster of drug approvals.

The company filed legal complaints when a rival — Bionpharma — sought to introduce a generic competitor to Epaned, saying it would infringe upon its patent. Representatives from Silvergate did not respond to multiple requests for comment.

In other circumstances, drugmakers could pursue even more market protections from the FDA. For instance, if the process of reformulating the drug involved clinical trials with children, manufacturers can win an additional six months of market exclusivity.

Additionally, two FDA guides are in the works recommending that doctors default to agency-approved drugs over similar compounded medicines, unless there is a particular chemical difference that makes the compound more effective. Cost isn’t a factor.

Together, experts say, those regulations can make it easier for companies looking to profit from limited investment or innovation.

“There’s . . . an increasing list of companies where it was only about gaming the rules, and not about anything that can be recognized as real pharmaceutical research,” said Jerry Avorn, a professor of medicine at Harvard Medical School who studies prescription drug policy. Silvergate, he added, appears to fit that mold.

A Safer Drug, But At A Price

Getting a compound drug can be logistically difficult for patients — not all pharmacies are certified to make them — and it assumes some trust, because the pharmacists involved aren’t held to the same manufacturing standards as for commercially available drugs. A 2012 fungal meningitis outbreak linked to the New England Compounding Center left 64 patients dead and raised consumer and regulatory concerns. Ultimately, the outbreak triggered heightened federal oversight of compounding.

Fox suggested that the value added by the new drugs — while meaningful — is counteracted when the price climbs.

“It’s better for patients if we’re using FDA-approved drugs,” Fox said. “But if no one can afford them, or if they raise prices so much other things are being impacted, then all the FDA approval in the world won’t improve access.”

These liquids do serve an important purpose, though — they’re lower-risk than compounds, and reformulating these drugs certainly requires work. But critics say the creativity involved in developing the drugs doesn’t justify its expense. And the generic enzyme inhibitors they use cost pennies.
At stake for Baker-Smith’s patients is getting needed medical care, or going without.

“There are plenty of kids who can’t take a pill. For them,” she said, getting liquid drugs “is lifesaving.”

KHN’s coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.

Categories: Health Care

March For Science Moments: Harvard Dean's Outrage, Stories Of Lives Saved

CommonHealth (WBUR) - Sat, 04/22/2017 - 5:06pm
From the dean of Harvard Med to a girl saved from dying of cancer, some voices from the Longwood rally before Saturday's March For Science in Boston.
Categories: Health Care

Leaders Of Boston Medical Powerhouses Back 'March For Science'

CommonHealth (WBUR) - Fri, 04/21/2017 - 6:58pm
The March for Science, says Dr. Jason Wasfy of Massachusetts General Hospital, "is not about politics so much as it is about really hammering home that science matters. And in biomedical science, it matters for our patients' lives."
Categories: Health Care

Drugmakers Dramatically Boosted Lobbying Spending In Trump’s First Quarter

Kaiser Health News - Fri, 04/21/2017 - 4:58pm

Eight pharmaceutical companies more than doubled their lobbying spending in the first three months of 2017, when the Affordable Care Act was on the chopping block and high drug prices were clearly in the crosshairs of Congress and President Donald Trump.

Congressional records show those eight, including Celgene and Mylan, kicked in an extra $4.42 million versus that quarter last year. Industry giant Teva Pharmaceutical Industries spent $2.67 million, up 115 percent from a year ago as several companies embroiled in controversies raised their outlays significantly.

“It’s certainly a rare event” when lobbying dollars double, noted Timothy LaPira, an associate professor of political science at James Madison University. “These spikes are usually timed when Congress in particular is going to be really hammering home on a particular issue. Right now, that’s health care and taxes.”

Trump has come down hard on drugmakers, stating in a press conference before his inauguration that the industry is “getting away with murder.” He has promised to lower drug prices and increase competition with faster approvals and fewer regulations. Sens. Bernie Sanders (I-Vt.) and John McCain (R-Ariz.), and Rep. Elijah E. Cummings (D-Md.) have introduced bills to allow lower-cost drug imports from Canada or other countries.

Use Our ContentThis KHN story can be republished for free (details).

Lobbyists weren’t expecting much by way of big policy changes during the comparatively sleepy end of the Obama administration this time last year, but with a surprise Trump administration and a Republican-controlled House and Senate, trade groups and companies are probably “going all in,” LaPira said.

Thirty-eight major drugmakers and trade groups spent a total of $50.9 million, up $10.1 million from the first quarter of last year, according to a Kaiser Health News analysis. They deployed 600 lobbyists in all.

PhRMA, the drug industry’s largest trade group, spent $7.98 million during the quarter —more than in any single quarter in almost a decade, congressional records show, topping even its quarterly lobbying ahead of the Affordable Care Act’s passage in 2010.

In their congressional disclosures, companies listed Medicare price negotiation, the American Health Care Act, drug importation and the orphan drug program as issues they were lobbying for or against. They do not have to disclose on which side of an issue they lobbied.

When Medicare prices are on the table, it should come as no surprise that pharmaceutical companies are interested in influencing congress.

“It’s quite literally hitting their bottom line,” LaPira said.

Drugmakers under fire more than doubled their lobbying dollars. Mylan spent $1.45 million during the quarter, up from $610,000 last year. The company’s CEO faced a congressional hearing in the fall when it raised the price of EpiPen to over $600.

Marathon Pharmaceuticals spent $230,000, which was $120,000 more than last year. Marathon was criticized in February after setting the price of Emflaza, a steroid to treat Duchenne muscular dystrophy, at $89,000 a year. That angered advocates, Congress and patients who had been importing the same drug for as little as $1,000 a year. Marathon has since sold the drug to another company, and the price may come down.

Teva and Shire also more than doubled their spending. Teva was accused as part of an alleged generic price-fixing scheme in December, and the Federal Trade Commission sued Shire because one of its recently acquired companies allegedly filed “sham” petitions with the Food and Drug Administration to stave off generics.

Companies that make drugs for rare diseases also more than doubled lobbying dollars as congressional leaders and the Government Accountability Office work to determine whether the Orphan Drug Act is being abused. Those firms include BioMarin, Celgene and Vertex Pharmaceuticals. Celgene, which makes a rare cancer drug, more than tripled its first quarter lobbying to more than $1 million.

Despite efforts to make good on campaign promises to repeal the Affordable Care Act, House Republicans canceled a floor vote on the American Health Care Act in March after multiple studies estimated that millions of people would lose coverage if it passed, and neither Democrats nor ultra-conservatives lined up in opposition to the bill’s provisions. Drug prices weren’t a key part of the package.

KHN’s coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.

Categories: Health Care

In Case You Missed It…

Center on Budget and Policy Priorities - Fri, 04/21/2017 - 4:44pm

This week at CBPP we focused on health care, the federal budget and taxes, housing, Social Security, and poverty and inequality.

Categories: Benefits, Poverty

New Trump Executive Action Could Make It Easier for Profitable Corporations to Avoid U.S. Taxes

Center on Budget and Policy Priorities - Fri, 04/21/2017 - 4:04pm

During his presidential campaign, Donald Trump railed against corporate “inversions,” through which U.S.-based firms move their headquarters overseas to avoid paying U.S. taxes — while continuing to benefit from American customers, employees, and infrastructure. Referring to one high-profile inversion, President Trump said, "Frankly, I'm disgusted with it and I'm tired of seeing it and there's no reason for it. It's just gross incompetence at the highest level.

Categories: Benefits, Poverty

Reported Amendment to House ACA Repeal Bill Guts Protections for People with Pre-Existing Conditions

Center on Budget and Policy Priorities - Fri, 04/21/2017 - 3:41pm

The amendment fixes none of the House bill's underlying problems.  

Categories: Benefits, Poverty

Marathon Pharmaceutical Drops Out Of PhRMA Following Drug Price Controversy

Kaiser Health News - Fri, 04/21/2017 - 3:24pm

With the sale of its controversial rare-disease drug finalized, Marathon Pharmaceuticals has taken the unusual step of resigning from the powerful industry lobbying group PhRMA.

Marathon had been a member of the Pharmaceutical Research and Manufacturers of America, and Marathon’s CEO, Jeffrey Aronin, had held a position on the board.

The news of Marathon’s resignation comes after the company was widely criticized this year for the $89,000 price tag for Emflaza, a drug for Duchenne muscular dystrophy. Last month, it sold the drug to PTC Therapeutics.

The resignation also falls as PhRMA works on a review of its membership criteria.

“My view is that we want to represent companies that are really swinging for the fences … [companies] that are taking enormous risks in bringing breakthrough treatments to market,” PhRMA President Stephen Ubl said in a recent interview with Kaiser Health News. “So we’ll be looking at our membership criteria to really focus on those attributes.”

Use Our ContentThis KHN story can be republished for free (details).

An announcement about PhRMA’s membership criteria is expected in the coming weeks.

Mallinckrodt Pharmaceuticals is also no longer a member of PhRMA. A company spokesperson confirmed Mallinckrodt’s resignation in an email, saying “the significant financial and time commitment required” for PhRMA membership outweighed the policy value.

Mallinckrodt, like Marathon, has been in the spotlight for a high-priced drug. The company had bought the decades-old drug H.P. Acthar Gel, which is used to treat a variety of conditions, including lupus and multiple sclerosis. The drug cost $1,235 in 2005, but in 2015, it was priced at about $35,000.

PhRMA said it had no comment about the two drugmakers leaving the association. Neither company is listed as a member on the association’s website.

Marathon declined to comment for this story. The company has no drugs on the market.

According to a company memo obtained by Kaiser Health News, Marathon has discontinued membership in “all relevant associations” after the sale of Emflaza.

Emflaza was approved as an orphan drug by the Food and Drug Administration in February. But the drug has been available outside the U.S. for decades under the generic name deflazacort.

It is a steroid used to lessen the symptoms of Duchenne, a fatal muscle-wasting disease that affects mostly boys. For years, many American patients have imported the generic version at a cost averaging from $1,000 to $1,600 annually.

Facing public outcry over the price of Emflaza, Marathon first said it would “pause” the launch of the drug. In March, it announced that PTC Therapeutics would buy rights to the drug for $140 million in cash and stock. The drug’s new price has not been announced.

Ken Kaitin, a professor at Tufts University School of Medicine said the pharmaceutical industry has justified high prices by saying it needs to pay for research and development.

But when members like Marathon and Mallinckrodt take older drugs and charge high prices, “the rest of the pharma industry has trouble explaining that to the public.”

KHN’s coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.

Categories: Health Care

Download Search Results and Advanced Search Enhancements – Congress.gov 2017 Spring Cleaning

In Custodia Legis - Fri, 04/21/2017 - 2:10pm

Congress.gov Homepage Highlights

Spring is a beautiful time of year in Washington, D.C.  The temperature warms up; the cherry blossoms are out; and we frequently have an update of Congress.gov to share. In 2015 we added treaties and web-friendly bill text, and in 2016 we expanded the quick search feature. Today there is another round of enhancements to the Library of Congress website for tracking Congressional activity.

The big new item in this release is the ability to download your search results to a CSV (comma separated values) file.  You can then open and manipulate the data in a spreadsheet.  Soon, I will write a post to demonstrate this feature in more detail.

There have been a few changes on the homepage.  One nice addition is highlighting Search Tips. Above that, in the News from the Law Library section, there will now be a contextual photo from the blog post.

Several improvements and features have been added to the Advanced Search, Query Builder, and Quick Search forms.  One nice addition to many of the Quick Search forms is a related Browse link next to the About link.  It gives you a fast, direct way to switch from searching to browsing.

Also, when using the Quick Search “Words and Phrases” box, it now defaults to a presumed AND between the words rather than OR.  This change is a direct result of user testing.  What does it mean? If you typed Library of Congress, the search previously would have been looking for Library OR of OR Congress.  With the current updates, it is looking for Library AND of AND Congress.  This will generate fewer items in your search results.  For now, this feature is only available in Quick Search.

Committee Reports Quick Search adding Browse Committee Publications, Report Types, and Search in.

The Query Builder also has been enhanced.  There are now selections from the drop down for “no word variants” and “case sensitive” for several items.  And there are more distance options for the “is near” operator on the form.

Enhancements to the Query Builder Form

The RSS and Email Alerts page continues to grow with Nomination Alerts now listed there.

Nomination Alerts added to RSS and Email Alerts

The Congress.gov Enhancements page provides a complete list of these and the enhancements from prior releases:

April 2017

Enhancements – Download Search Results

  • Export up to 500 search results items to spreadsheet or CSV file

Enhancements – Quick Search Guided Forms

  • “Words and Phrases” defaults to AND
  • Date and Member Remarks filters for Congressional Record
  • Tile/headings filter for Committee Reports and Congressional Record
  • Chamber of Origin filter for Legislation Text
  • Links to “Browse Legislation,” “Browse Committee Publications,” “CR Browse,” facilitate access to a library of popular reports. 

Enhancements – Legislation Advanced Search Guided Form

  • Link to “Browse Legislation” facilitates access to more than 35 frequently used reports.
  • Congress selection checkbox and other improvements to the guided form 

Enhancements – Query Builder Search Form

  • Additional word proximity (“is near”) options
  • New “Word Variants” and “Case Sensitive” options 

Enhancements – Alerts and Saved Searches

  • Subscribe to Nomination Alerts to RSS Page 

Enhancements – Homepage 

  • Search Tips and Law Library news
  • Display session convene times for the House

Please share your Congress.gov feedback via this survey or in the comments below.  For a quick refresher on Congress.gov enhancements from last year, take a look at this post.

Categories: Research & Litigation

GOP Tax Plans Would Emulate Failed Kansas Experiment

Center on Budget and Policy Priorities - Fri, 04/21/2017 - 12:23pm

Massive tax cuts Kansas enacted in 2012 were among the largest ever adopted by a state, and delivered lopsided benefits to the wealthy. Key architects of Kansas’ tax cuts, including Governor Sam Brownback and long-time tax cut advocates Stephen Moore and Art Laffer, are urging federal lawmakers to mimic Kansas’ plan.

Categories: Benefits, Poverty

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