Why patient groups stay out of drug price debate
Public anger over the cost of drugs 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 month 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 indus-
try, 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 past 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 CEO of the National Multiple Sclerosis Society, recently discovered.
Zagieboylo 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, almost 400 percent higher than the $16,000 average in 2004, the group says.
But as soon as Zagieboylo started discussing a plan — a modest proposal that involved bringing together drugmakers, 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,” she 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 at an event attended by the National Health Council, an umbrella group for patient advocacy groups.
But Zagieboylo said the resistance 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 gave about $10 million to the group in 2015, according to its website, accounting for about 4 percent of its annual budget.
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 FDA, 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.
Some patient groups have directly challenged the industry. The American Diabetes Association, for example, called on drug companies this year to be more open about their prices and to allow the federal government to negotiate over Medicare drug pricing.
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.
Part of the problem for the patient groups, many sources said, is that there are no easy answers. Drug pricing is notoriously opaque and complex, involving a series of companies — like pharmacy benefit managers such as Express Scripts, drug distributors such as Cardinal Health, or pharmacies such as CVS or Walgreens — that can also profit from higher prices.
Yet patient groups may be increasingly pulled into the pricing debate whether they like it or not. Dr. James 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. In September, the group announced it will stop taking money from Mylan until there is meaningful competition in the market.
Part of the reason patient groups have not taken up the drug pricing issue, Baker said, is that 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.”