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Patient groups funded by drugmakers are largely mum on high drug prices

Jayne O'Donnell
USA TODAY

WASHINGTON — Drug companies provide so much of the funding for major patient groups that many critics say they've stifled a key voice in the policy debate over soaring drug prices, especially over those for cancer.

The Leukemia and Lymphoma Society, for example, gets $50 million a year from drugmakers, which comes to about 16% of their funding. The National Patient Advocate Foundation receives 60% of its $2 million budget from the pharmaceutical industry, while the Colon Cancer Alliance gets 15% of its $1.2 million budget.  Several other groups get up to 20% of their revenue from drug companies.

Ezekiel Emanuel, an oncologist and professor who chairs the University of Pennsylvania’'s department of medical ethics and health policy.

"It is worrisome because it is a conflict of interest even if you can’t prove it changes their position," says Ezekiel Emanuel, an oncologist and professor who chairs the University of Pennsylvania's department of medical ethics and health policy. "The patient voice carries a disproportionate amount of weight."

One reason for the apparent lack of interest in drug costs is that patient groups are focused on developing drugs to cure their respective diseases. They care far less about costs because the patients  want and need the drugs, often to survive. So they join with drugmakers in pushing to have them developed without as much concern over the costs.

The Affordable Care Act, which Emanuel helped write as a White House health policy adviser, capped total annual out-of-pocket costs at $6,850 for an individual and $13,700 for a family. While even that is more than many people could afford, experts say the true cost may come when employers and insurers pass the difference along. "Your insurer is still paying the full cost of the product so it's going to come back to you and be built into the premiums and cost sharing going forward," says Leigh Purvis, director of health services research at AARP's Public Policy Institute.

Nearly all large companies pay their employees' health claims, and insurers simply administer the plans at the companies' direction. "I could say that employers are distressed about high drug prices, but that's putting it too mildly," says Leah Binder, CEO of the Leapfrog Group, which represents major employers on health care and rates hospitals.

NPAF and other patient groups say they aren't influenced by the drug money. Alan Balch, NPAF's CEO, says its agenda is "driven by the patients we serve first and foremost and approved by an independent board."

"Drug pricing is one of many costs our patients struggle with and it is not the primary thing patients ask our case managers for help with," Balch said.

NPAF's 2015 data on calls from about 14,000 cancer patients shows transportation was the top concern, followed by hospital and doctor co-pays, rent and mortgages and then prescription co-pays. 

Drugs "are one of the many costs" faced by cancer patients and their families, said the Leukemia & Lymphoma Society in a statement. Along with helping patients who can't afford their insurance costs, the group is beginning research comparing drug costs to their value and is urging drugmakers to share quality of life and outcomes data to support their pricing, says spokeswoman Andrea Greif.

Others who represent patients say funding as well as the groups' advocacy raises questions.

The San Francisco-based Breast Cancer Action adopted a policy nearly 20 years ago that it wouldn't accept donations from drug companies or other corporations that could profit off of cancer.  "BCAction’s work as the watchdog for the breast cancer movement is credible and effective because of the organization’s commitment to preventing real or perceived conflict of interest from our corporate donors and organizational leadership," says a statement on the group's website.

But such groups are the exception when it comes to drug pricing.  Purvis says she hasn't heard "too many patient advocacy group complaining about prices," yet many are facing huge debt and bankruptcy. Holly Woodcock, an Idaho nurse who won an essay contest last year for her story about her colorectal cancer treatments, says that if her cancer returns she told her husband she doesn't want to treat it because "I refuse to leave him bankrupt."

If patient groups discuss costs publicly at all, they typically focus on co-payments insurance companies charge and the higher-priced tiers they put specialty drugs on in their plans, she says.

Pat Mastors, a former TV news anchor, started the Patient Voice Institute to give patients a voice in health care policy and design. The group doesn't take drug company money.

Drugmakers have a natural alliance with patient groups, which helps explain their alliance, says Robert Zirkelbach, a spokesman for the Pharmaceutical Research and Manufacturers of America trade group.

“Patient groups and biopharmaceutical companies share the same goal of improving patient access to innovative therapies and ensuring the continued development of new treatments and cures," Zirkelbach said in an emailed statement.

On Wednesday, 124 patient groups including NPAF, the AIDs Institute, and several others that also get considerable pharmaceutical industry funding, sent a letter to the Centers for Medicare and Medicaid Services urging stricter enforcement of ACA rules prohibiting discrimination against patients with chronic diseases. The letter noted the coalition supports CMS' proposal warning insurers about high co-pays and "adverse tiering."

"Proposing changes to prescription drug coverage without addressing the underlying price ... amounts to giving drug companies a blank check to charge whatever they want," says Clare Krusing, spokeswoman for the insurer trade group America's Health Insurance Plans.

"Advocacy associates" of the International Myeloma Foundation gave presentations this fall that were sponsored by four drug companies and the Biotechnology Innovation Organization and warned patients that oncologists are offered financial incentives for following treatment regimens.

These "clinical pathways" are another way insurers try to control high drug costs. Insurers use clinical data to come up with recommended treatments based on what works best, Oncologists aren't required to adhere to them but get extra money from insurers if they do.

"Anything pharma thinks limits their market or access they’re against," says Michael Kolodziej, an oncologist who is Aetna's national medical director for oncology strategy. "If there's a really exciting new drug, (drugmakers) want us to say 'let’s just try it,' but that can’t happen when a drug comes out at $150,000 a year — and there's no new agent that comes out at less than that."

The Centers for Medicare and Medicaid Services said last month that increased ACA enrollment and high specialty drug prices drove the 5.3% increase in health care costs in 2014. Drug prices overall went up 14% in 2014 and 10% last year. Many drug companies' profit margins range from 30% to 50%, notes Emanuel, which he said is far higher than insurance companies. He said says one way of dealing with the issue would be to require that patient groups disclose their funding.

When Woodcock, 53, ended her chemotherapy in 2010, "I was well over $35 thousand in the red — all from stupid cancer," she wrote in her essay. "Costs are crippling cancer patients to the point of losing jobs, losing businesses, losing homes, having liens, going bankrupt."

Leah Binder, CEO of the Leapfrog Group, says patients need a bigger voice in the drug price debate.

Pat Mastors, co-founder of the Patient Voice Institute, is trying to get patients more involved in health care policy, including on drug prices, but lacks the resources of those that do take drug money.

"We have to create public pressure to change the incentives ...for drugmakers to set prices that don't cripple people with debt," says Mastors, a former TV news anchor who has two family members with cancer. "It's hard if others are taking a lot of money from pharma to know where the allies are to build momentum."

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