By Katie Thomas, New York Times
September 27, 2016
Public anger over the cost of medical products has burned hot for a year, coursing through social media, popping up on the presidential campaign, and erupting in a series of congressional hearings, including one last week over the rising price of the allergy treatment EpiPen.
But one set of voices has been oddly muted — the nation’s biggest patient advocacy groups. The groups wield multimillion-dollar budgets and influence on Capitol Hill, but they have been largely absent in the public debate over pricing.
To those who have closely followed the drug world, the reason is simple: Many of the groups receive millions of dollars a year in donations from companies behind the drugs used by their members. When they prod drug companies, it is generally for better — not less expensive — treatments.
But critics say that by avoiding the debate over cost, they are failing in their patient-advocacy duties..
“It is a conflict of interest, because the interests of the pharmaceutical industry, from whom they are getting support, may be different from the interests of the patients,” said Dr. Michael Carome, the director of the Health Research Group at Public Citizen, a consumer advocacy group.
Over the last year, pharmaceutical companies have increased prices on medications as varied as breakthrough hepatitis C drugs and little-known generics that have been around for decades. The higher prices have hit American pocketbooks harder than usual, as insurers have increasingly shifted costs to patients.
And for patient groups, loudly addressing the issue can be perilous, as Cyndi Zagieboylo, the chief executive of the National Multiple Sclerosis Society, recently discovered.
She said members of her group, one of the most influential patient charities, had identified cost as a priority. The average annual cost for multiple sclerosis medications is $78,000 today, nearly 400 percent higher than the $16,000 average in 2004, the group says.
But as soon as Ms. Zagieboylo started discussing a plan — a modest proposal that involved bringing together drug makers, insurers and others to find solutions — she said she encountered resistance. Other patient groups would not join her, and she said she was told by members of Congress, as well as some of the pharmaceutical companies that donate to her group, to tread carefully.
“We were warned, you know, in a number of ways, just sort of to be careful about this,” Ms. Zagieboylo said. “A couple of pharmaceutical companies mentioned, ‘Boy, we support you, why are you doing this to us?’”
The group went ahead with the new campaign anyway, announcing it last week at an event attended by the National Health Council, an umbrella group for patient advocacy groups.
But Ms. Zagieboylo said the pushback gave her pause. She said she and the group’s board members decided they had to be ready to lose donors over the issue, including drug companies. The pharmaceutical industry donated about $10 million to the group in 2015, according to its website, accounting for about 4 percent of its annual budget.
“They are taking a lot of heat,” she said of the companies, who she said were not solely to blame for higher drug prices. “And they don’t want us to pile onto that, because they know we have influence.”
That influence is what makes patient groups so attractive to the drug industry. Some of the largest groups can call on millions of dedicated and highly motivated members and help drug companies by signing up participants for clinical trials, running financial assistance programs and even lobbying government officials for drug approvals or favorable legislation.
“It’s much more compelling when a parent reaches out to their congressman and says, ‘Please contact the F.D.A., because my child is dying,’” said Diana Zuckerman, the president of the National Center for Health Research, a nonprofit that does not accept money from industry.
But she said patient groups were less likely to take positions that might undermine a drug company’s business. “I’ve found almost none that are focused on the public health issues of affordable health care, affordable insurance, a sustainable system,” she said.
Some patient groups have directly challenged the industry. The American Diabetes Association, for example, this year called on drug companies to be more open about their prices and to allow the federal government to negotiate over Medicare drug pricing. The association said it received $26.7 million from the pharmaceutical industry in 2015, accounting for 14.5 percent of its budget.
But those actions have been the exceptions. And when patient groups have discussed pricing, their ire is largely focused on insurance companies, expressing arguments similar to those used by the pharmaceutical industry.
The Leukemia & Lymphoma Society, for instance, one of the largestcharities in the United States, has frequently criticized insurers for exposing patients to high out-of-pocket costs for patients, commissioning two studiesthat looked at the impact of these high costs. But it has not been as outspoken about the decision by drug companies to set those prices. Some blood cancer drugs that the society’s members need cost tens of thousands of dollars.
The group, which has an annual budget of about $300 million, spends millions of dollars a year funding research at universities and pharmaceutical companies that it hopes will lead to new treatments for blood cancers. According to its annual report, of the group’s 16 largest donors, eight were pharmaceutical companies. All eight donated more than $1 million to the society in 2015.
The group has been soliciting corporate sponsorships as well. On its website promoting sponsorships, aimed at drug and other companies, the society pointed to its “powerful footprint” of millions of constituents, and described itself as “an outstanding cause to build good will, positive public relations and marketing benefits that align with your brand and reputation.”
Last week, the society removed its corporate sponsorship page from its website, after The New York Times asked a spokeswoman about the language on the web page. She said the page was removed because the information was out of date.
Andrea Greif, a spokeswoman for the leukemia society, said the group considered access to drugs a key issue, and that it was meeting later this year with patients, insurers and manufacturers to address the problem.
She also said the group was “in the process of taking a fresh look at our position to ensure that we are living up to our role as the voice for all blood cancer patients.”
Part of the problem for the patient groups, many people said, is that there are no easy answers. Drug pricing is notoriously opaque and complex, involving a series of companies — such as pharmacy benefit managers like Express Scripts, drug distributors like Cardinal Health, or pharmacies like CVS or Walgreens — that can also profit from higher prices.
“We’re in an environment where all the stakeholders are blaming each other, and undermining each other, because of escalating costs,” said Marc Boutin, chief executive of the National Health Council, the organization that represents patient groups. Pharmaceutical companies accounted for 62 percent of the council’s $3.5 million budget in 2015, a spokeswoman said, and representatives from drug companies and an insurer sit on its board.
Representatives for the drug industry say the spotlight on pricing has obscured the headway companies have made in treating serious conditions.
“We are on the cusp of a new era of medicine,” said Robert Zirkelbach, a spokesman for the Pharmaceutical Research and Manufacturers of America, an industry lobbying group.
Yet patient groups may be increasingly pulled into the pricing debate whether they like it or not. Dr. James R. Baker Jr. and his group, Food Allergy Research & Education, got an uncomfortably close look at the shifting landscape several weeks ago, when they were criticized for taking money from Mylan, the company that makes the EpiPen.
This month, the group announced it would stop taking money from Mylan until there was meaningful competition in the market. Dr. Baker said about 6 percent of the group’s budget came from the pharmaceutical industry, but did not say how much came from Mylan, citing a confidentiality agreement with the company.
Part of the reason patient groups have not taken up the drug pricing issue, Dr. Baker said, is because for years, many of their members had insurance with low co-payments and deductibles, shielding them from the total cost of drugs.
“It was more of an issue of whether or not they could get the drug, and whether it was on the formulary, than what they were paying for it,” he said. “I think that is changing.”