bucket of money, sticker shock, rebates

Patient advocacy groups are often perceived as an independent voice for the patient’s perspective. A recent Senate report shows that opioid manufacturers paid more than $10 million to patient groups that were in theory grass roots organizations promoting a patient agenda. The Senate investigators found that these groups often supported increased opioid use, a message favorable to the drug companies’ interests. The report is titled: “Exposing the Financial Ties Between Opioid Manufacturers and Third Party Advocacy Groups.”

According to Senator Claire McCaskill, who released the report,

“These financial relationships were insidious, lacked transparency, and are one of many factors that have resulted in arguably the most deadly drug epidemic in American history.”

Purdue Pharma, maker of Oxycontin, was one of the biggest donors. Professional medical societies were also recipients of pharma money.

Pharmaceutical Manufacturers Supporting Patient Groups:

This is not the first time patient groups and nonprofit advocacy organizations have been called out for accepting money from the pharmaceutical industry. Last year a report in The New England Journal of Medicine showed that 83 percent of 104 patient-advocacy organizations had received drug company support. The title of the article was:

“Conflicts of Interest for Patient-Advocacy Organizations”

When people think of nonprofit patient-advocacy groups they often assume that these independent organizations are working tirelessly to overcome a particular disease or make life better for patients in need. This article reveals that industry support is 1) widespread, 2) conflicts of interest are widespread 3) Disclosure practices are limited and 4) self-regulation of conflicts are poor.

Which Patient Groups Are Affected?

Some of the most common and worrisome conditions have been supported by industry money. They include:

Diseases Targeted for Industry Money

  • Cancer
  • Nervous system
  • Musculoskeletal
  • Heart or lung
  • Vision
  • Kidney
  • Diabetes
  • Mental health
  • Lupus


We’re talking big bucks! According to the New England Journal of Medicine review:

“Given that donation amounts were typically reported in ranges, it is impossible in most cases to provide precise estimates of the amount of industry support that patient-advocacy organizations received. Of the 59 organizations that published the amounts of donations, 23 (39%) reported receiving at least $1 million annually from industry donations; 13 (22%) reported receiving less than $1 million; and 23 (39%) reported information that did not allow a determination of whether industry donations were less than $1 million or at least $1 million.”

A completely different research group published similar findings in JAMA (March, 2017). The authors noted:

“This survey study found that 67% of a national sample of patient advocacy organizations, virtually all of which were not for profit, reported receiving funding from for-profit companies. Twelve percent received more than half of their funding from industry; a median proportion of 45% of industry funding was derived from the pharmaceutical, device, and/or biotechnology sectors.”

People’s Pharmacy Perspective:

Why should you care where patient groups get their money? We think conflict of interest is always a problem. If you have watched the olympics you want the referees to be absolutely impartial. It would be outrageous if one team had any influence over the judgement of the people overseeing a hockey game, for example.

Most people assume that patient advocacy organizations for heart disease or cancer are totally independent. People give money to such patient groups in the hopes that they will advance research, health policy and education in an objective way. They do not think that the boards of these groups would be infiltrated by industry representatives or that the organizations would become dependent on the largesse of drug companies. Sadly, that is not the case.

We agree with the JAMA study that concluded:

“Financial relationships between PAOs [patient advocacy organizations] and industry demand effective steps to ensure that these groups serve their constituents’ interests while minimizing risks of undue influence and bias. Given the growing ability of PAOs to influence health care policy and practice, their financial practices and safeguards demand the same degree of scrutiny applied to other key actors in the health care landscape.”

What do you think? Share your opinion about conflicts of interest in the comment section below.

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  1. Cathy

    A less visible side of industry support for patient organizations is that there is almost no mention of support for research into real prevention. There’s no money to be made in prevention. Like wise there’s no interest in researching natural non pharmaceutical treatments. Again, there’s no profits in treatments that can not be patented. We lose out in so many ways.

  2. jean

    I’m so sorry, but it’s difficult to read or pay proper attention to important online articles with the constant barrage of drug ads popping up……

  3. Lynne

    The article and the comments are true. The truth is that the medications required for all rare diseases (not all rare anymore) have astronomical prices. Without health insurance (expensive) and some assistance, these drugs are unaffordable.

    The costs are outrageous because the government permits the pharmaceutical companies charge what they want. They get this $ from the insurance companies (you indirectly) and Medicare/Medicaid (you taxpayer). While I understand making a profit, these prices are years beyond the coverage of research and development (2). Also, generics just never seem to happen after 10+ years on the market.

    We’ve been the beneficiary of these programs because my husband’s medicine for his pre-existing autoimmune disease is over $60,000 per year (in other countries much less). A little outside of our budget. We do attend the lunch and dinners that the drug company offers occasionally. They’re a nice break in our routine dealing with this disease.

    President Trump has said he will address the high medicine $. I believe him.

    Please continue to spread the word. I explain this to everyone when I have the opportunity. The only one who benefits off of the patient are the pharmaceutical companies (and pockets of politicians???).

  4. Lois

    This post is concerning a PART D Medicare problem, seeming minor, but important in the scheme (especially the fact that the govt. cannot negotiate Part D prices. To start, I am 83 years old. In 2016 my gastroenterologist prescribed a generic Protonix 40 mg (a very high dose) to treat my Stage 4 esophagitis (sp?) ($6.50 copay for 60 pills, saving $213) and then gave me a “lifetime” order for 30 mg. same. This wreaked havoc with my thyroid medication and caused many side effects including weight gain, within six months. My internist was in charge of correcting this, but he also felt that the 30 mg pill daily was not causing this. On my own I tried using Tums and acid reducers instead of the PPI, which caused me swallowing problems after about 3 months (also my Schacters (sp?) ring.) I then bought 15 mg generic Prevacid OTC for $25.00 for 42 pills, and have been doing this ever since. My system has righted itself and as always, I take my thyroid and PPI 12 hours apart. But we cannot get the insurance company to okay my 15mg dose because I have no record of getting the (lansoprazole rather than pantoprazole) on prescription previously. I will continue to overpay for my pills OTC (I’m very lucky that what is prohibited because of “dangers” prescription-wise is available quite reasonably in every drugstore OTC!)
    On my own I tried taking

  5. Bob
    Chapel Hill, NC

    Orthopaedic device manufacturers, the companies that make knee and hip replacements, provide vast amounts of money to support national scientific meetings. When their devices prove to have defects, the organizations they support are distressingly slow to acknowledge these problems.

  6. Paul

    Talk about the fox guarding the hen house! In my mind it borders on lunacy for anyone to think that companies “donate” money to organizations without expecting to receive benefits/profits from their generosity. Certainly some companies make lesser donations to charitable organizations but transparency demands that their donations NOT be to organizations that might potentially be in a position to enhance the profitability of the donor company. So long as the U S Congress, through the IRS rules and regulations, make such donations profitable the practice will continue.

    Ever wonder how our congressmen of both parties manage to build their wealth while in office? This is NOT done from the not very significant salaries they receive. The system is tilted against those of us who worked for our living and payed taxes on our earnings.

  7. Jane

    Once again, money talks. No surprise here for me. This is one more example of the foxes running the henhouse. I often wonder if the drug company execs, researchers, reps etc have a medicine chests full of expensive, side effect riddled, often marginally effective, prescriptions. Bets anyone?

  8. Anne

    Why isn’t someone going to jail or paying some really heave fines? These people are basically drug pushers, and they know how addictive this stuff is. It’ is truly criminal.

  9. Amy

    It is nearly impossible to discuss the concerns of pharmecutical care and therapies with the population because of the brainwashing of the public. Organizations such as NAMI and those for Autism are weak when discussing negative impact of meds on ‘disorders’. Those of us trying to promote other views ( because of experiencing harm ) are viewed as out of step and threatening with our message.

  10. Donna

    Having served as a volunteer for several patient advocacy groups, I can tell you that any sponsorship by special interests does NOT filter down to the individual volunteer level. I had complete autonomy of how I ran my group and was not influenced by corporate sponsorship. Like it or not, without such corporate sponsorship, many of these programs wouldn’t exist or would be even more limited in what they can do. I am a health professional and absolutely not a big fan on Pharma but, I also want to be careful about not throwing the baby out with the bath water.

  11. Gerry

    No way can a group be independent if it’s taking money from drug industry, same as PAC contributions affect politics. “He who has the money calls the shots.”

    • Ed

      So you say.

    • colleen

      Gerry thank you for your reply! I am in an MBA business ethics class and next week I have to present on pharma ethics. So happy I came across this topic in my weekly newsletter. I will use it and your quote, “He who has the money calls the shots.” Good one!

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