When disease charities partner with drug companies, where does that leave patients (and reporters)?

A few weeks ago, I reached out to a disease charity for comment on a story I was working on. Disease charities are nonprofits like the American Heart Association, the Cystic Fibrosis Foundation, etc., that raise money to support the research, care and awareness of people who live with a given condition.

The story was about a rare but very dangerous side effect that was tied to new drug. The side effect is considered so serious that other drugs that cause it have been yanked off the market because of the risk.

I expected the scientific officer I spoke with to react to this news, which was published in a top-tier medical journal, with alarm and concern for patients who were taking the medication, which is poised to become a blockbuster. Instead, though, he was largely dismissive of the reports. He extolled the potential benefits of the newly approved medication for patients.

As reporters, we all have those moments when our spider senses tingle. You may not be able to put your finger on exactly why, but something just doesn’t feel right.

That’s the feeling I was getting as I interviewed this doctor, who is the chief research officer at the charity in question. Why so positive about the drug? I wondered. Where was the note of caution I had expected him to sound?

Reluctantly, I ditched the entire interview and ended up searching for more independent sources for the story.

Last week, AHCJ member John Fauber, an investigative reporter for the Milwaukee Journal Sentinel who specializes in exposing financial conflicts of interest in medicine, sent a link to his latest report on venture philanthropy.

If you don’t get a chance to read anything else today, take 10 minutes to check out his story, which has certainly made me more cautious about including nonprofits in my reporting.

In a nutshell, venture philanthropy refers to partnerships between nonprofits and pharmaceutical companies to develop new drugs. It’s an emerging trend among disease charities, who claim their startup funds are keeping promising new therapies from lingering on the R&D shelves of companies who wouldn’t otherwise spend money to develop medications that might help relatively small numbers of patients.

But the charities aren’t simply donating money to drug development and walking away. They stand to make millions if the drugs they invest in come to market. The Cystic Fibrosis Foundation, which entered into a venture philanthropy partnership with the drug company Vertex to develop the pill Kalydeco, doubled its initial $75 million investment when it sold its rights to future royalties to an undisclosed investment firm.

And what’s wrong with that? For organizations that constantly scrounge for donations pay salaries for staff and fund patient-oriented programs, a financial windfall from a drug could go a long way toward keeping the lights on.

The problem, I would argue, is that charities that partner with drug companies on big financial deals like these are in danger of losing their moral and ethical responsibility to act, and speak, in the best interests of patients.

As Fauber reports:

“Last month, new treatment guidelines for doctors who handle cystic fibrosis patients strongly recommended use of Kalydeco. The guidelines were funded by the Cystic Fibrosis Foundation.”

Kalydeco, which only benefits about 4 percent of people with cystic fibrosis, costs patients and insurers more than $300,000 a year. A drug company is reaping staggering profits off a financial investment from patients. Doesn’t really seem like a fair deal, does it?

So, reporters beware when looking for disinterested parties to comment on drug stories.

Even if you’re calling about a drug or treatment they’re not directly funding, it seems likely that it would still be in their best interest not to raise the hackles of other pharmaceutical companies they may be actively working to partner with.

Fauber’s story made me do some digging, and sure enough, the disease charity I contacted for my story is one of the bigger players in the venture philanthropy world.

An organization called TRAIN (The Research Acceleration and Innovation Network) keeps a list of some venture philanthropy deals here. It’s worth checking before you pick up the phone.

2 thoughts on “When disease charities partner with drug companies, where does that leave patients (and reporters)?

  1. Wavefunction

    I sympathize with your viewpoint and definitely agree that conflicts of interest have to be taken into consideration when interviewing scientists and doctors. But as far as the price goes, we do need to factor in the high costs of drug development. Vertex partnered with the CFF partly because it would have been very difficult for them to raise all the money required to design and bring the drug to market. We might reasonably argue about the exact cost, but it’s true that there are few ways for pharmaceutical companies to recover their R&D spending, especially if their drug targets such a small patient population (the cost is high precisely because the population is small). It’s also interesting to note that of all pharmaceutical companies, Vertex plugs in the highest percentage of their profits back into R&D so they are paying a lot of attention to the actual research.

  2. si baker-goodwin

    Thank you for this — timely for my purposes, and exactly something I was growing concerned about for a project I’m working on. Nice work!

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