When Allison Ruddick was diagnosed with stage 3 colorectal cancer in October 2014, she turned to the world of hashtags.

After her initial diagnosis it wasn’t clear if the cancer had metastasized, so she was in for a nerve-wracking wait, she says. She wanted outside advice. “But they don’t really give you a handbook, so you search kind of anywhere for answers,” Ruddick says. “Social media was one of the first places I went.”

Under the hashtags #colorectalcancer and #nevertooyoung on Facebook, Twitter and Instagram, other patients were sharing a fuller picture of their experience with cancer treatments.

Later she found even more advice on specialized message boards. Patients posted everything from the details of their surgeries to the ice packs they liked best as they recovered. “These weren’t things that my doctor could tell me, and as much as I appreciate their expertise, it’s also really limited by the fact that they’ve never really experienced any of this themselves,” Ruddick says.

Partly because of that experience gap, doctors and drug companies are keen to learn from online communities, too. They’re analyzing social networks to get a faster, wider look into how patients react to drugs, sometimes picking up information about side effects that clinical trials missed.

The rule of three

Stanford University dermatologist Bernice Kwong specializes in skin conditions that tag along with cancer treatments. In her practice and on patient message boards, she’s constantly on the lookout for symptoms that could be drug reactions.

In January 2017, a patient came to Kwong’s office with an unusual complaint. “I’ve noticed that when I work out, I just get really hot,”he told Kwong. “I don’t sweat anymore, and I used to sweat so much.” He was taking a drug called Tarceva,or erlotinib, that’s used against lung cancer.

At first, Kwong thought the problem might be hormonal. But soon after, two more of her patients at Stanford on the same drug reported that they’d also stopped sweating. “Anytime something hits three, I think, OK, I gotta look into this a little bit more,” she says.

But she hadn’t seen any reports before of a lack of sweating — hypohidrosis — as a side effect for Tarceva. Her sample size of three patients was small. She’d need more data to figure things out.

From talking with patients and perusing online forums, Kwong knew people discussed their treatments and side effects online. In fact, hundreds of thousands of people participate in support groups and communities she’d looked at on the website Inspire. She partnered with the site with the idea that its trove of patient reports could connect more dots between hypohidrosis and Tarceva.

A sharper data set

Inspire’s focused groups are filled with patients’ experiences with diseases and treatment, so analyzing posts requires less filtering than Facebook or Twitter data would, says Nigam Shah, a Stanford University bioinformatics specialist who collaborated with Kwong. It also helped that the skin reactions they were interested in are relatively easy for patients to describe.

Still, the posts on Inspire’s boards are less precise than insurance claims and health records typically used for studies on side effects.

Take loss of sweating. Most doctors would refer to that as hypohidrosis, so a records-based study could focus on that phrase. In online message boards there’s a lot of variety. One person’s “I can’t sweat anymore” might be another’s “I’m overheating.”

Kwong, Shah and their colleagues used a deep learning algorithm to process the phrases surrounding reports of symptoms, basically finding contextual clues to identify the different ways patients referred to side effects.

In 8 million posts on Inspire from a 10-year period, 4,909 users mentioned Tarceva, or erlotinib generically. Although clinical reports don’t link the drug and hypohidrosis, 23 patients wrote about the medicine and loss of sweating in the same post — a statistically significant connection, Kwong says. The research group’s findings were published in JAMA Oncology in March.

Using the same approach to monitor posts about a different class of immunotherapy cancer drugs, the researchers found mentions of autoimmune blistering that also predated the clinical reports of the side effect.

Given the stakes of cancer treatment, Kwong says she’s inclined to help patients manage side effects instead of stopping a given drug. But earlier alerts from systems like this could have made a difference in her practice. “If we had had this program already, I would’ve been looking out for [blistering] sooner and maybe I would’ve noticed it earlier in some patients,” Kwong says.

How clinical trials miss side effects

From numbers alone, it’s no surprise that clinical trials for drugs don’t pick up every side effect. The Food and Drug Administration first approved Tarceva in 2004 on the basis of a trial that enrolled 731 patients, 488 of whom received the drug. Uncommon effects might not show up in a group that size.

On Inspire’s message boards, more than 10 times as many patients reported using Tarceva, so it’s reasonable to imagine that online posts could include reports of rarer side effects.

And while drug trials do collect data on side effects, their overriding goal is to find out whether or not a drug works, says Dr. Aaron Kesselheim, a professor of medicine at Harvard University. “After a drug is approved, it is absolutely essential to continue to observe, follow and study the drug rigorously as it’s used in a larger population to try to really get a handle on the safety of the drug,” he says.

Collecting data about a drug from insurance claims and health records typically happens with quite a time lag. So mining the Internet and social media for casual patient reports is tempting, Kesselheim says, because of its potential scale and speed. But the approach also has drawbacks. “You just get this tidal wave of data, and it’s hard to know how to assess it in a rigorous and thoughtful fashion,” he says.

That hasn’t stopped drug companies from wading in. Roche has sampled mentions of their products from Twitter, Tumblr, Facebook and blogs to learn more about drug safety. GlaxoSmithKline has tried it too, analyzing millions of mentions of drugs from Twitter and Facebook.

Much of the work published so far has focused on drug reactions. But scraping public social media data isn’t just a matter of product safety. The company Synthesio touts its social data services for drugmakers as a way to answer customer questions, conduct market research and influence purchasing.

Surfing responsibly

In terms of extending studies to mine even bigger networks, like Twitter or Facebook, for potential side effects, Kesselheim points to issues of representation and privacy. As with any analysis, a deep learning model like the one Shah used on the Inspire message boards can only make conclusions about the information it sees.

And it’s hard to guarantee that message boards and social media represent all patients. In 2012, researchers gave 231 breast cancer patients in rural Michigan and Wisconsin computers, Internet access and training to use an online cancer support group. The researchers found that white women were much more likely to log on and post in the group than black women. Younger women were also more likely to post information.

While the long-standing approach to post-approval drug studies — using health records and claims data — may be slower, Kesselheim says, they’re more established. “There are methodologies and tools that you can use in claims data to try to make sure that you are making conclusions that can be generalizable across different races and ethnicity and genders and parts of America,” he says.

There’s also the issue of privacy — patients’ health records are protected by the Health Insurance Portability and Accountability Act of 1996, whereas public data online aren’t, Kesselheim says.

For Stanford researcher Shah, this wasn’t an issue. Inspire’s privacy statement tells patients their posts may be used for research if they’re not private, and Shah feels comfortable following common sense rules when using public data. “As in, if somebody did [something] with my data and I would be upset, don’t do that with someone else’s data,” he says.

But the newness of social media makes Kesselheim wary. “There are big questions that remain about how patient privacy is upheld in those social media contexts, and I think that’s a really big issue to think about moving forward as people are trying to use those outlets to provide insight into drug safety and side effects.”

As a patient, Ruddick isn’t bothered by the idea of researchers and pharmaceutical companies studying data from social media and patient message boards, as long as the data are public or there’s mention of data sharing in a privacy statement.

She works as a communications director in New York City, so she’s thought a lot about the nature of information online. “If I’m putting something out there on the Internet, it’s for the Internet. I know the world is going to see it,” Ruddick says.

She knows other patients might feel differently, but she’s optimistic that analyzing patients’ interactions online could improve the treatments available. “It’s one thing, being in a lab and developing these drugs,” she says. “But it’s a completely different thing to see how they’re being used out there in the world, and to see how they’re affecting somebody’s life.”

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To reach the Martinez home in Puerto Rico’s central mountains, social worker Eileen Calderon steers around piles of dirt, treacherous potholes and power company trucks that block the road. Finally, we pull up to a sagging cement home, the roof done in by Hurricane Maria. Laundry hangs under a tarp, and a cat is tied to a leash outside the door.

Calderon, who is based in San Juan, and works for VarMed, a company that handles complex medical cases in Puerto Rico, has brought two colleagues — a nurse, Anamelia Velazquez and a primary care physician, Dr. Carla Rossotti — to check in on Osvaldo Martinez and his son, Osvaldo Daniel Martinez.

Inside a darkened bedroom, the elder Martinez, a 67-year-old former star pitcher in the local baseball league, spoons rice and sausage into his son’s mouth. The younger Martinez lies in a hospital bed, his arms and fingers spasm and his eyes loll around in his head. He’s 37 years old, born in Chicago, a former security guard.

Some three years ago, after he and his father moved back to Puerto Rico from Illinois, the younger Martinez started showing early signs of multiple sclerosis. Over the last year, his world became this room, then this bed.

His father points to the ceiling — leaking from the morning’s rain and covered in mold.

“All of this leaking that you can see came out because of the hurricane,” he says.

The power came back on in his house about a month ago, and the family has running water, so he is able to keep his son clean. The father carries a plastic basin into the bathroom and draws the water. Then, as he does a few times each day, he returns to the bedroom to bathe his adult son and gently change his diaper.

But Rossotti, whose company VarMed, has been paid by the Puerto Rican government help take care of Martinez Junior, says the young man can’t yet get an appointment to see a neurologist to confirm his multiple sclerosis and start treatment. There is a chronic shortage of neurologists on the island, and those who remained after the storm have few slots in their schedulesfor Medicaid patients.

“We have a patient who was stable a year ago and now he’s bedridden,” Rossotti says. “He hasn’t been able to get that neurologist evaluation.”

Calderon, the social worker, says she has been trying for a year to get an appointment for Martinez, but receptionist after receptionist tells her the neurologists they work for are taking no new patients.

People here in Puerto Rico talk about life “before Maria” and life after. But for many of the island’s most vulnerable residents, the 2017 storm exacerbated problems that existed long before.

The island’s financial crisis has sent doctors fleeing to the States over the last decade; Hurricane Maria added further fuel to that exodus. There is no exact accounting yet of just how many physicians have left the island, but from 2006 to 2016, the number of doctors dropped from 14,000 to 9,000, according to the College of Physicians and Surgeons of Puerto Rico.

Nearly half of Puerto Ricans on the island rely on Medicaid — compared to around 20 percent of the population in the continental U.S. The territory’s government has long struggled to cover the costs of health care, partly because Congress caps the amount of money for Medicaid it sends to the island from the federal treasury.

Puerto Rico essentially receives a block grant for Medicaid — a certain amount of money for each citizen in the program, no matter how great the needs for care are. The island government recently announced that it will overhaul how Medicaid contracts are awarded.

Currently, Molina Healthcare, a California-based company that provides health insurance coverage to low-income people on Medicaid in Puerto Rico and elsewhere in the U.S., is ostensibly responsible for guaranteeing access to needed doctors.

A spokesperson for Molina, Laura Murray, says the company cannot comment on the Martinez case, or that of any individual patient, because of privacy laws.

But in a written statement, the company representative reports that it contracts with 41 neurologists in Puerto Rico’s east and southwestern regions, and meets “the network adequacy requirements in our contract.”

“However,” the statement continues, “we recognize that there is an island-wide shortage of physicians — particularly specialists — and we are proposing suggestions to [the Puerto Rico government] on how we could work together to remediate this.”

For now, the younger Martinez languishes — each day and night no different than the next, as the disease lays siege to his central nervous system, disrupting the vital connections between brain and body.

Without a confirmed diagnosis, he can’t get certain public disability benefits. And he isn’t getting medication for his condition or his pain; the agency Rossotti works for can only advocate for patients, not treat them.

The outward perseverance of father and son belies the true terror of their confinement. As Martinez Senior describes his son’s decline, tears come to his eyes; his son, who can understand everything, rolls on his side and begins to weep.

“I have to do all that needs to be done for him,” Martinez Senior says. But he is 67 years old, and not in good health himself. He has severe arthritis and a painful bulge in his abdomen. During the months they went without power, he says, the hospital bed didn’t go up and down. He shows me a photo of his arm — black and blue and swollen — from pressing against the metal bars of the bed as he leaned down to tend to his son.

But it’s his son’s withering away that pains him most.

“If something would happen to me,” the father says, clasping his hands together in prayer — “I don’t know.”

Sarah Varney is a senior national correspondent at Kaiser Health News, a nonprofit health newsroom that is an editorially independent part of the Kaiser Family Foundation.

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The Trump administration named HIV expert Dr. Robert Redfield to lead the Centers for Disease Control and Prevention, ignoring complaints that he botched high-profile vaccine research more than 20 years ago.

The Army in 1994 acknowledged accuracy issues with HIV vaccine clinical trials led by Redfield, but concluded at the time that the data errors did not constitute misconduct.

In an announcement Wednesday afternoon, Health and Human Services Secretary Alex Azar emphasized Redfield’s care of HIV/AIDS patients and his work as a researcher, which included the controversial research.

Yet one of the whistleblowers who first raised the matter to the Army told Kaiser Health News this week that he remains so troubled about Redfield’s handling of the vaccine research that he has decided to speak out publicly.

Redfield was principal investigator over clinical trials of a treatment vaccine at the Walter Reed Army Institute of Research. The research was conducted at a time when there was intense pressure to come up with a treatment for HIV/AIDS, which often killed patients within a matter of months.

“Either he was egregiously sloppy with data or it was fabricated,” said former Air Force Lt. Col. Craig Hendrix, a doctor who is now director of the division of clinical pharmacology at Johns Hopkins University School of Medicine. “It was somewhere on that spectrum, both of which were serious and raised questions about his trustworthiness.”

In a letter to Trump this week, Washington Sen. Patty Murray, the ranking Democrat on the health committee, cited the research controversy as an example of a “pattern of ethically and morally questionable behavior” by Redfield that should prompt the president to reconsider the appointment.

Redfield’s appointment, which does not require Senate confirmation, was leaked to the news media over the weekend. Redfield did not respond to questions.

Redfield, who denied any scientific misconduct at the time, is now an HIV/AIDS specialist at the University of Maryland School of Medicine. He has been praised by his supporters for his care of patients. He oversees a clinical program that treats 6,000 patients in the Baltimore-Washington area, according to an online bio.

But Redfield’s critics said the appointment demonstrates that the Trump administration is not vetting appointees thoroughly. The first CDC head, Brenda Fitzgerald, stepped down in January after a controversy over her purchase of tobacco stocks, and former HHS Secretary Tom Price resigned late last year amid criticism over his use of government and private planes for official travel.

“The White House claimed they would do better background checks,” said Dr. Sidney Wolfe, founder and senior adviser of Public Citizen’s Health Research Group. “But that statement is dangerously laughable. If they had done a proper background check, they wouldn’t have chosen Dr. Redfield.”

Public Citizen, a Washington watchdog group, was a leading critic of the Army’s handling of Redfield’s data at the time and obtained and published documents that detailed the controversy.

Hendrix, who was the director of an Air Force HIV clinical unit when he raised the concerns, said: “Two members of his [Redfield’s] team told me they had tried to replicate the analysis, but they couldn’t. When they tried to go to the Army, they said they were ignored.”

After Hendrix couldn’t replicate the results, he drafted a letter to his superiors reporting the data problems.

Hendrix said Redfield’s superiors initially told him not to send a letter detailing the concerns. Instead, the military scheduled a meeting with Redfield and other researchers so Hendrix could discuss the concerns. In the meeting, Hendrix recalled, Redfield acknowledged he had overstated how promising the results were.

“I thought it was resolved,” said Hendrix, who said he later called Redfield to say he was proud to work in an organization that could openly discuss such concerns.

However, Hendrix soon heard Redfield make the same inaccurate representations of the data at a conference and decided to file an official complaint requesting an investigation into scientific misconduct.

An Air Force institutional review board also recommended that the Army launch an inquiry stating: “The committee agreed the information presented by Dr. Redfield seriously threatens his credibility as a researcher and has the potential to negatively impact AIDS research funding for military institutions as a whole.”

But the Army did not appear to launch a full investigation, said Hendrix, who was interviewed at the time by the military official who conducted the inquiry. The military official declined Hendrix’s attempts to provide documented evidence, telling him the investigation was “informal.”

Hendrix later asked the commander of his hospital about the outcome of the investigation. He recalled that the commander called another officer to ask.

“I just remember him saying “Yes, sir,” he said. “When he hung up, he told me, ‘We will not be discussing this again.’ “

Redfield was transferred from the laboratory he headed and assigned to treat patients, although the Army said he was not being punished. The Army also said the data would be corrected, and the military scrapped the program.

The project had earlier drawn criticism because Congress had set aside $20 million for the vaccine after lobbying by a former senator on behalf of the manufacturer.

Hendrix said he occasionally interacted over the years with Redfield and holds no grudges.

“Before this happened, he made important contributions to HIV-prevention efforts,” he said. “I respected him.”

However, he said, he remains disturbed by the military’s handling of the matter. He teaches a class on medical ethics and uses his own experience without naming Redfield to describe to his students the ethical quandaries faced in research.

Faulty data can lead other scientists to repeat the same mistakes and prompt participants to seek out trials for drugs and vaccines that don’t work.

“It’s a huge waste of funds,” he said. “But just as importantly, it diminishes trust, which is essential in science. If truth is eroded, then the whole enterprise falls apart.”

Kaiser Health Newsis a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundationthat is not affiliated with Kaiser Permanente.

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When Health and Human Services Secretary Margaret Heckler announced that scientists had discovered the virus that caused AIDS at a press conference in 1984, the disease was still mysterious and invariably fatal.

Perhaps with a vaccine, AIDS could be ended like smallpox or contained like polio, two scourges that yielded to intense public health interventions. Heckler suggested that experimental vaccine trials were just two years away.

We now know that HIV is rarely curable, though it can be managed with antiviral medicines. And more than 30 years later, HIV vaccine research has produced mainly a string of failures.

Onlyone major HIV vaccine trial has shown anyprogress to date. In that study, done in Thailand, a two-stage vaccination approach called RV 144 resulted a roughly 30 percent reduction in HIV infections after several years. These results were hailed as proving the concept that an HIV vaccine could be protective, but the results weren’t strong enough to pursue regulatory approval.

Public health officials still say that a vaccine is essential to vanquishing HIV and AIDS.

“Development of an effective HIV vaccine will likely be necessary to achieve a durable end to the HIV pandemic,” Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, wrote inJAMA, the journal of the American Medical Association, in October.

And Fauci is optimistic that it can happen because the vaccines don’t need to be perfect to be helpful. An incremental improvement over the one tested in the Thai trial could have a major effect on spread of HIV, he says.

The best case scenario is a vaccine that is at least 60 percent effective, Fauci says in an interview, “but I’d settle for from 50 to 55.” With a HIV vaccine that stops a little more than half of all transmissions, “you could really nail down the end of the epidemic,” he says.

There are two HIV vaccine trials underway today that Fauci says are the most promising efforts since 2009.

The first trial, calledHVTN 702, began its third and final phase in 2016 with 5,400 South African volunteers. Results are expected in 2021.

“We were able to tease out what were the immune responses that we think were responsible at least partly for protection of [the Thai vaccine],” says Susan Buchbinder, director of Bridge HIV at the San Francisco Department of Public Health. The HVTN 702 study is “tailored for the sub-Saharan African epidemic, and we’re currently testing that combined vaccine regimen,” she says.

Buchbinder, a leader in the HIV Vaccine Trials Network, notes that the Thai vaccine was 60 percent effective for the first year before weakening to 30 percent. She says the HVTN 702 trial uses a new regimen that scientists hope will draw out the higherresponse over a longer period of time.

In November 2017, a separate trial called “Imbokodo” launched in five southern African nations. Itattempts to address the challenge ofvaccinating against the strains of HIV that areprevalent in different regions of the world.

HIV is “kind of what I call a sloppy virus — it makes mistakes and it doesn’t correct them,” Buchbinder says. “That makes it difficult for the antibodies to keep up.”

Imbokodo uses what Buchbinder calls “a mosaic insert,” or lab-created fragments of HIV, to train the body to make the antibodies that are likely to be most effective against the common strains of HIV, rather than the approach used in HVTN 704 and RV 144, both of which specifically targeted regional HIV strains.

But even as U.S. public health officials hope for a safe and effective HIV vaccine, there has been progress on other fronts. Robust HIV testing, treatment, and prevention programs — in the District of Columbia, San Francisco, and New York City, for instance — have led to significant reductions in the rate of new HIV cases over the past decade.

Two of the most effective HIV prevention tools today were discovered in the past decade: PrEP, short for pre-exposure prophylaxis, and TasP, short for treatment as prevention. Both involve taking HIV medication daily and both dramatically reduce the risk of transmitting or contracting the virus. PrEP and TasP are statistically more effective at preventing HIV than condoms, and they have revolutionized HIV prevention and treatment — at least in areas with robust access.

For example, the District of Columbia had one of the fastest growing HIV rates in the country a decade ago. But aggressive public health action — including free condoms, needle exchanges, widespread testing, rapid treatment for newly diagnosed people and easily accessible PrEP — helped cut the number of newly diagnosed HIV infections in the city from 1,333 cases in 2007 to 347 cases in 2016, down 73 percent.

But when health officials in Washington released a racy sexual health ad campaign last December, its imagery raised eyebrows: a woman licking an ice cream cone, a churro being dipped in creamy sauce, a plate of hot dogs and an explosion of mustard.

“Thinking about sex?” asks a sultry voice. “Then think about PrEP.”

The sexual innuendo is plain, and that’s just how Michael Kharfen wants it. He heads the HIV/AIDS office in Washington’s health department.

“For the broadcast networks, we are airing it after 10 at night, which is fairly reasonable,” Kharfen says with a smile.

But if you’re in the target demographic online, he explains, you’ll come across this ad on Pandora, YouTube or even Facebook.

“One of our goals — particularly with scaling up PrEP — is around how to not lose momentum,” says Kharfen.

Washington is at the point where so few people are becoming HIV positive that Kharfen’s office can analyze each case and ask hard questions. “Where did the system fail that person?” Kharfen says. “Where did we not make sure that somebody had the opportunity to have PrEP, or to have some prevention strategy that fit them that would have averted this diagnosis?”

“You could actually turn off the AIDS pandemic right now,” says NIAID’s Fauci, reflecting on the success of jurisdictions like Washington. If existing approaches were universally implemented, HIV transmission would grind to a halt, and that would be a “somewhat awesome feeling,” he says.

But it’s “theoretical,” Fauci says, because PrEP and TasP haven’t been implemented widely enough to end the pandemic.

That’s why a vaccine is so important, he says,even if it only provides imperfect protection against HIV. Results from the two vaccine trials that provide the best shot at that goal are expected in late 2020 and 2021.

Tim Fitzsimons is a New York-based reporter. He tweets at@tfitzsimons.

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The Affordable Care Act very nearly failed to become law back in 2010 because of a dispute among Democrats over how to handle abortion in the bill.

Now a similar argument between Democrats and Republicans is slowing progress on a bill that could help cut soaring premiums and help stabilizethe ACA.

At issue is the extent to which the Hyde Amendment — language commonly used by Congress to prohibit most federal abortion funding — should be incorporated into any new legislation affecting the health law.

Republicans generally want more restrictions on abortion funding. Democrats generally want fewer.

Here’s a bit of the history of how we got here.

What is the Hyde Amendment?

The Hyde Amendment, named for Rep. Henry Hyde (R-Ill.), an anti-abortion champion who died in 2007, prohibits federal funding of abortion in Medicaid and several other health programs run by the Department of Health and Human Services. Current exceptions allow for funding in cases of rape, incest or “where a physical condition endangers a woman’s life unless an abortion is performed.”

But the Hyde Amendment is not permanent law. It has been included as a rider every year since 1977 to federal spending bills and its exact language changes from time to time. The rape and incest exceptions, for example, were not included in the annual HHS spending bill from 1981-93. During that time, the only exception was for abortions required to save a pregnant woman’s life.

Hyde-like language has been added to other annual spending bills over the years, so federal abortion funding is also now forbidden in private health insurance plans for federal employees, women in federal prisons, those in the Peace Corps and women in the military, among others.

Over the years, Democrats have worked, unsuccessfully, to eliminate the Hyde Amendment, charging that it unfairly harms low-income women who cannot afford to pay for abortions. Proposed elimination of the language was included in the Democratic Party’s 2016 platform.

Republicans have tried, also unsuccessfully, to write the Hyde funding prohibitions into permanent law. “A ban on taxpayer funding of abortion is the will of the people and ought to be the law of the land,” said then-House Speaker John Boehner (R-Ohio) in 2011.

So, what happened with the ACA and abortion funding?

Republicans in both the House and Senate unanimously refused to support the Affordable Care Act when it passed Congress in 2010. In order to pass the bill over GOP objections, Democrats needed near unanimity among their ranks, abortion remaining the biggest hurdle.

The Democratic caucus at the time had a significant number of members who opposed abortion, particularly those representing more conservative districts and states. In order to facilitate movement, House and Senate leaders agreed that the health bill should be “abortion-neutral,” meaning it would neither add to nor subtract from existing abortion restrictions. Even today there is disagreement about whether the law actually expands or contracts abortion rights.

At the time, Democratic sponsors of the bill were buffeted by appeals from women’s groups who wanted to make sure the bill did not change existing coverage of abortion in private health insurance; and from abortion opponents, led by the United States Conference of Catholic Bishops, who called the bill a major expansion of abortion rights.

The bill passed the House in 2009 only after inclusion of an amendment by Rep. Bart Stupak (D-Mich.), a longtime opponent of abortion. That bill included a government-sponsored health insurance plan that would have been available on all states’ exchanges. Stupak’s provision would have made the Hyde Amendment a permanent part of that plan. The amendment also banned federal premium subsidies for private health insurance plans that offered abortion, although it allowed for plan customers to purchase a rider with non-federal money to cover abortion services.

Eventually, the Senate bill dropped the government-sponsored plan, so no restrictions were necessary on the abortion issue. And it was the Senate plan that went forward to become law. Still, differences remained over how to ensure that subsidies provided by taxpayers did not go to private plans that covered abortions.

In the upper chamber, a compromise was ultimately reached by abortion-rights supporter Sen. Barbara Boxer (D-Calif.) and a Democratic senator who opposed abortion, Ben Nelson from Nebraska. Nelson was the final holdout on the bill, which needed all 60 Democrats in the Senate to overcome the unanimous GOP opposition. The Boxer-Nelson language was a softening of the Stupak amendment but still allowed states to prohibit plans in the ACA’s insurance marketplaces from covering abortion.

In addition, President Barack Obama agreed to issue an executive order intended to ensure no federal funds were used for abortions.

In the end, both sides came out unhappy. Abortion opponents wanted the Hyde Amendment guarantees in the actual legislation rather than the executive order. Abortion-rights backers say the effort constricted abortion coverage in private health plans.

And both sides are unhappy, still. According to the Guttmacher Institute, a reproductive health research group, 26 states have passed legislation restricting abortion coverage in any plan sold through the ACA’s insurance exchanges.

Another 11 states have passed laws restricting abortion coverage in all private insurance sold in the state. Nine of those states allow separate abortion riders to be sold, but no carriers offer such coverage in those marketplaces, according to a 2018 analysis by the Kaiser Family Foundation. (Kaiser Health News is an editorially independent program of the foundation.)

And three states — California, New York and Oregon — require nearly all insurance plans to provide abortion coverage, according to the National Women’s Law Center.

And, what’s at stake in the latest health bill?

The issue for 2018 is a bipartisan bill that seeks to stabilize the individual insurance market and the ACA’s health insurance exchanges by providing additional federal funding to offset some recent premium increases. Some options include restoring federal subsidies for insurers who cover out-of-pocket costs for very low-income customers and setting up a federal reinsurance pool to help insurers pay for very expensive patients.

But once again, the abortion debate threatens to block compromise.

Many Republicans are dubious about efforts to shore up the health law. They still hope its failure could lead to a repeal they were unable to accomplish in 2017.

Even some who say they are sympathetic to a legislative remedy want to add the permanent Hyde Amendment language that was left out of the final ACA, although included in Obama’s executive order.

That is “not negotiable for House Republicans,” a spokeswoman for House Speaker Paul Ryan (R-Wis.) said this month. The White House has also endorsed a permanent Hyde Amendment.

But Sen. Patty Murray (D-Wash.), who has been negotiating the insurance bill for the Democrats, calls any additional abortion restrictions “a complete non-starter” for Democrats.

Kaiser Health News (KHN) is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

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When Roger Severino tells his story, discrimination is at its heart.

“I did experience discrimination as a child. And that leaves a lasting impression,” he tells me.

Severino directs the Office for Civil Rights in the U.S. Department of Health and Human Services. When I meet with him at his office in the shadow of the Capitol, he talks about his childhood as the son of Colombian immigrants growing up in Los Angeles.

“I remember a white kid coming up, as I was in the pool, [who] said a racial epithet,” Severino recalls. “My response as a kid was — I was confused, in a way. Why would they say such a thing?”

Later, when he entered high school, Severino’s counselor tried to steer him to shop class and vocational training.

“And I said, ‘Well, don’t you offer honors classes?’ ” Severino says. “And the counselor, who was white, said, ‘Yeah, but you’ll have to take a test.’ “

He took the test, got into the classes and eventually went to Harvard Law School, where he vowed to fight for civil rights.

“I’ve been moved to help others who face much worse discrimination than I ever did, get a chance at the American dream,” he says.

But since he took over as head of the HHS civil rights office a year ago, some advocates see Severino’s tenure at the agency as more of a nightmare.

“Director Severino presents himself as a civil rights lawyer. And what he has done as OCR director is turn the idea of civil rights on its head,” says Harper Jean Tobin, policy director at the National Center for Transgender Equality.

That’s because Severino — a devout Catholic and political conservative — has put the right to religious freedom front and center in his fight against discrimination in health care.

In public appearances he refers to religious freedom as “the first freedom.” Since coming to HHS he has issued a rule that allows employers to refuse to cover birth control as part of their employee health insurance plans, if employers have a religious or moral objection to contraception.

And earlier this year he created an entirely new division within the civil rights office — the Division of Conscience and Religious Freedom. Its mission, he says, is to ensure that health care workers and health care companies, are never forced to participate in particular medical services — such as abortion, assisted suicide or gender reassignment surgery — if they object.

HHS’s Office for Civil Rights has traditionally focused on making sure people are not denied medical care because of their race or gender. And it is charged with protecting patients’ medical privacy. The office tends to get roughly 25,000 complaints each year.

Under the Obama Administration, those civil rights protections were extended to gay, lesbian and transgender people. At the time, Severino was working at the Heritage Foundation and called that interpretation of the law “radical.”

His aim, he says, is to tilt the balance back — to make sure people with religious objections are not forced in their work to violate their religious beliefs.

“All we’re doing is saying that we will be enforcing all of the civil rights laws,” he says. “And all those civil rights laws include conscience and religious freedom. We believe they weren’t given the proper attention for too long a time, and now it will be getting the proper attention it deserves.”

That’s little comfort to Severino’s critics, who say his efforts will likely reduce women’s access to reproductive health services and could aggravate discrimination against transgender people.

Just a few weeks after he started at HHS, Severino met with representatives from several different advocacy groups — including Judith Lichtman, senior advisor to the National Partnership for Women and Families.

She says Severino billed the meeting with about 20 people as a “listening session.”

“He opened the meeting telling us his heartfelt story about knowing and understanding discrimination,” she says. “And, frankly, stories will get you just so far.”

Because he was “listening,” Lichtman says, Severino declined to answer questions about his own positions on specific issues. But she believes his actions since then — including creating the religious freedom office — point to a desire to limit women’s access to reproductive health services.

“Abortion is a legal health care service in this country,” Lichtman says. “And if, indeed, what Mr. Severino is intending to do is to undermine protections for women who are seeking a legal health care service, I’d say that’s pretty abhorrent.”

Tobin, the transgender rights advocate, was also at that meeting and has similar concerns.

“No one is forcing doctors to perform gender-affirming surgeries against their will,” Tobin says. “But what is happening every day, is transgender patients are being denied every kind of medical care you can think of.”

More than a third of the more than 27,000 transgender adults polled in the 2015 U.S. Transgender Survey said they experienced health care discrimination in the previous year.

And a report by the Center for American Progress — which reviewed a subset of complaints to the office of civil rights — shows that the majority of discrimination complaints filed by transgender people were related to medical care that had nothing to do with gender transition.

But Severino says it’s equally alarming that doctors or nurses would be forced to violate their conscience to keep their jobs. He says since he arrived at HHS and made it clear he was open to listening to complaints of conscience, his office has received more of these complaints than were filed in all the Obama years combined.

“America’s doctors and nurses are dedicated to saving lives,” he says. “And they shouldn’t be bullied out of the practice of medicine simply because they object to performing abortions against their conscience.”

Jocelyn Samuels, who was the head of the office for civil rights during the Obama years, says she worries that, under the current administration, the office will divert too much energy to handling a relatively small number of religious freedom and conscience complaints.

The number of such complaints “pale in comparison to the thousands of complaints that OCR receives under the civil rights laws, and under HIPAA — the law that protects the privacy and security of medical information,” Samuels says.

Severino previously worked at the Becket Fund, a nonprofit law firm that focuses on religious freedom. And, according to the conservative Heritage Foundation, Severino focused while there on “religious liberty, marriage and life issues,” as head of the foundation’s Devos Center for Religion and Civil Society.

He also spent seven years in the Justice Department’s civil rights division. He points to those years to reassure his critics that he’ll defend everyone with a valid discrimination complaint.

Severino is particularly proud of a housing discrimination case he fought in the wake of Hurricane Katrina: In an effort to prevent blacks from New Orleans from moving into a particular neighborhood, a local community had banned some homeowners from renting their houses.

A courtroom exhibit from the case — a map of the region with its racial breakdown — sits in the corner of his otherwise undecorated office.

And, to underline Severino’s civil rights credentials, his staff sent me a document titled “Proof of Impact of Roger Severino’s Career in Civil Rights.”

I reached out to several people who have worked with Severino, and none would speak with me about him on the record. Those who spoke on background say he’s honest and direct, and has a way of connecting with his clients. And, they say, they expect he will apply the law fairly.

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It was November 2014, and I was working on a feature story about a hot new blood-testing company in Silicon Valley that promised to “disrupt” the lab industry with new technology.

The company, Theranos, claimed its new finger-prick test would be a cheap and less painful way to run tests with just a few drops of blood. Old-fashioned venous blood draws, where the patient watches as vial after vial of blood is collected, would quickly become obsolete, Theranos promised.

The interviews took a month to arrange. The public relations officer wanted to know, did I “plan on sourcing other people?” and implied that CEO Elizabeth Holmes might not be available to me if I did talk to other sources.

I rejected that condition, and finally the company’s public relations people agreed to let me visit their site at a Walgreens in Palo Alto — one of the first in the country — to be followed by a sit-down interview with Holmes at her office.

I arrived at the Walgreens on the morning of Nov. 4 and was met by two Theranos press representatives who were there to supervise my visit. I took out my recording equipment (the story was to be for NPR) and began approaching patients who were waiting in line to check in for testing.

Some didn’t want to talk to a reporter, but others were open and gracious, sharing with me the reasons they had decided to give Theranos a try. One couple offered to let me come with them into the small testing room, set up to feel like a relaxing spa.

A pattern quickly emerged: None of the patients there that day were able to get a finger-prick test, as promised. Instead, all of them got a regular venous blood draw, same as I’d received on numerous occasions at my own doctor’s office, though the phlebotomist said the needle was slightly smaller.

I asked the phlebotomist if this was standard. Did most patients get the venous draw? She told me they “did more finger sticks than venous draws,” but couldn’t give me a number. One of the company’s press people approached me. I was not authorized to talk to the phlebotomist, he said, and asked me to erase the audio I had recorded. I declined.

I asked him why none of the patients were getting a finger prick. Just bad luck and timing, he said. This wasn’t how it usually was, he promised. And wouldn’t I just rather get a finger prick myself and report on the experience, like so many other journalists had agreed to?

I said no. I needed an actual patient to make a compelling radio story. So I continued waiting for other patients.

Soon, the two Theranos representatives approached me again — with a third, who had set up the interviews, on the phone. She said they were getting complaints about me asking patients questions. The main Theranos office had gotten several calls from people who had been in the Walgreens that morning, she claimed, angry that a reporter was bothering them.

I hadn’t pressured anyone. The patients had all been perfectly friendly and willing. I’ve also been a health reporter for 10 years, and never have I been told I was pushing patients to do something that made them uncomfortable.

Something seemed very wrong.

Soon, one of the Theranos representatives approached me again, clearly nervous. They were getting worried. Unless I found a patient getting a finger prick, he said, they would likely have to cancel my interview with Holmes.

I asked them to get the woman who had set up the interviews on the phone again.

Meanwhile, I sat down with another couple, who had driven 45 minutes to experience the vaunted finger prick. Would they too be steered to a traditional blood test?

All of a sudden, as I was interviewing them, a sudden and jolting BEEP BEEP BEEP reverberated through the drugstore. “Fire alarm!” someone called out, and we all evacuated to the street.

There was no smoke and no fire.

I’d never been in a drugstore when the fire alarm went off. Had someone pulled it?

I made a few more calls to various experts on lab testing to try to get to the bottom of the story: Was Theranos for real?

I was given an interview with a lawyer at Theranos, who promised me that “significantly more than 50 percent of the tests are done with a finger prick,” though she would say no more. I was unable to find out what was actually going on.

I decided to cancel the feature.

One month later, the New Yorker published another fawning profile of Theranos’ Holmes, who was favorably featured in magazines that also included Fortune and Wired.

And 10 months after that, John Carreyrou of The Wall Street Journal published the first of his groundbreaking investigations of Theranos, blowing the lid off the company’s fraudulent claims. Of the 240 types of blood tests the company said it did, only 15 used the finger prick.

Last week, after the Securities and Exchange Commission charged Theranos, Holmes and an ex-Theranos executive with fraud, I wrote the company to ask if one of their representatives had pulled the fire alarm that day at the Walgreens.

Theranos did not respond.

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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