There are many organizations in the United States that hold themselves out as advocacy organizations for better care for patients, but is that what they are really about? Here is a quote from KFF Health News.
“Pharma (drug) money is all over the place — in universities, companies doing continuing medical education for doctors and in prominent patient advocacy organizations that are household names across America.
Public Citizen, a consumer advocacy nonprofit, reports today that between 2010 and 2022, the drug industry’s main lobbying group and member companies provided at least $6 billion in grants to more than 20,000 organizations. The analysis, provided exclusively to KFF Health News in advance of its release, focused on the Pharmaceutical Research and Manufacturers of America (PhRMA) and 31 drug companies that were members of the trade group as of March.
The money dwarfs industry spending over that time on federal lobbying and campaign contributions to lawmakers. With high drug prices a regular topic of debate in Washington, drug industry grants to patient advocacy groups in particular raises questions about conflicts of interest — including whether organizations that accept the industry’s money shy away from pushing policies the drugmakers oppose, even if patients may benefit.”
Here are some examples you will recognize. The American Heart Association (AHA) received $64.1 million over 12 years. That is $5,300,000 dollars a year. I am going to focus on the AHA because I am a specialist in chronic cardiometabolic conditions, and I did volunteer work for the AHA for years.
According to Forbes, the American Heart Association receives $856 in total annual revenue with $581 million coming from private donations. They receive $16 million in government support. Their highest paid executive receives over $3 million dollars a year. Individual drug manufacturers, very large health systems, and drug store chains contributed over a million dollars each. This link goes to contributors that gave over $100,000 dollars but less than one million this year. The donors include the same drug manufacturers, health systems, and drug store chains as before, but in addition there are the largest health insurance companies, large academic health centers, and large for-profit hospital systems,
The AHA also gets a lot of money from endorsements. “The American Heart Association has one of the most aggressive campaigns in allowing its stamp of approval on products. In 1994, in exchange for a fee that ranges from $350 to $850 a year per product, it began allowing companies such as General Mills and Tropicana Products Inc., which produces grapefruit and orange juices, to carry the association's logo and the sentence "this product meets American Heart Association dietary guidelines for healthy people over age 2 when used as part of a balanced diet. Clearly, Corporate America finds the privilege valuable: Today, 39 food manufacturers pay to use the AHA name on 389 products." When the organization is being paid to endorse products as “heart healthy”, you should ignore those recommendations. Numerous brands of white potatoes are making the list. The glycemic index tells you how much and how fast a product will increase glucose in your blood. The glycemic index of glucose is 100 points; potatoes are usually listed as being in the high 80s or low 90s. Eating a potato increases your blood sugar almost as much eating the same number of calories of table sugar. A potato is not heart healthy! Eating lots of potatoes makes it harder to control your sugar if you are diabetic.
So, why does all this matter to you? The article from KFF Health News says it this way: The American Heart Association…. was silent on drug price negotiation. “We have strict standards in place to monitor relationships with industry and protect against conflicts of interest,” Steve Weiss, a spokesperson for the group, said in an emailed statement. “These funds in no way influence our advocacy, programs or science.” Right! The legal term for this is “res ipsa loquitur” or “the thing speaks for itself!” It is obvious. If an organization is getting millions of dollars every year from drug companies, it is nearly impossible to take positions that make it less likely that you will get those donations next year. That is the problem with glaring conflicts of interest.
Of course, it is not just the heart association. The American Cancer Society… received $23.1 million over a 12-year period. This great site takes you to the hundreds of healthcare advocacy organizations supported by drug company grants. One of the dots I clicked on was Harvard University and they receive millions from drug companies. Just click on the dots, and you can see which organizations got drug company money and how much they got.
Advocacy is a critical topic in our medical system. I was taught in medical school that the first duty of any clinician is to be an advocate for patients. I understood that to mean that I was to provide care that was centered first and foremost on the needs of the patient and that all other considerations are secondary to that obligation. That first duty has been the foremost guiding principle in my professional life. Healthcare advocacy organizations have that same first duty. The needs and priorities of the patient are very different from the needs and priorities of drug companies. The patient needs the most effective drug, with the fewest side effects and drug interactions for the least price. The drug company needs to extract as much money as possible from patients and other payers for the benefit of their executives and stockholders. Those needs are in direct opposition to each other. When a health advocacy organization takes money from drug and food companies, large hospital systems, for profit hospital systems, device companies and similar organizations that is a massive conflict of interest. Their ability to meet their first duty is compromised. It is the same with organizations that claim to be advocates for better healthcare for employers.
This is not just theory with me. I worked with a much smaller healthcare advocacy organization for years and I was a physician leader in that organization. One of the people who was important to the financial support of that organization made his living promoting products for drug companies and part of that promotion was engaging health advocacy organizations and supporting them. I was also working with a health reform advocate who encouraged advocacy organizations to fund their own efforts to avoid conflicts of interest. The drug promotion guy told me that I could no longer work with him and the advocacy organization if I continued to work with the health reformer. I continued to work with the health reformer and the advocacy organization cut ties with me. That was ok. It led to the work that I am doing now, and it was a valuable learning experience. The message is: play ball or else!
This whole topic is one of the reasons so many of you don’t trust our institutions anymore. I don’t know the detail in other institutions, but I know the detail in healthcare extremely well. You are absolutely right not to trust our healthcare system. Our healthcare system does is not centered on the needs of patients. It is centered on money and deals. If you give money to my organization, I will not make any noise about the prices you charge Americans for your medicines. You will still be able to charge two or three times as much for drugs compared with what other countries pay. That is the deal. If your potato company pays for it, I will say potatoes are good for your heart. I won’t help people understand that eating a potato increases the sugar in your blood as much as eating table sugar itself. It is not some deep-state bureaucrat in the basement of the Health and Human Services that is conspiring to create the swamp. Our medical institutions don’t serve you because of some of the most likeable, most personable, most successful, and wealthiest businessmen in your community. They lead our healthcare advocacy organizations and institutions. They put a higher priority on their business deals than your welfare.
The lesson? Today’s American healthcare doesn’t serve you because it is money ball. Businesses have taken over. American medicine is not about your health. It is about the money. Even the organizations that claim to be advocates for you are about the money. Too much? Not enough! If the American Heart Association was advocating for you, you would be able to get optimal medical therapy anywhere in the country. There is a mountain of evidence saying that is what we should be doing, but very few Americans have access. That is what conflicts of interest do.
What is the answer when our institutions have failed us? The answer is clear! The government and advocacy organizations are not going to make healthcare better. We must save ourselves. If you want healthcare advocacy organizations that truly advocate for you, they need to be your organization. That is why I am so enthusiastic about Primary Care for All Americans. It does not take money from drug companies. It does not have conflicts of interest. That is why I encourage you to join it, support it, and volunteer to make it more effective. The greatest need for American healthcare is to support basic primary care for all of us. Don’t blame other ordinary Americans. Come together. Light a candle! Don’t curse the darkness.
Apart from the patient advocacy groups staying quiet about some things, like drug prices, they end up being noisy about other things, like getting governments or insurers to cover the costs of the new, incredibly expensive drugs for specific conditions. They are more likely to be seen as “credible” and “unbiased”, as they ostensibly represent the patient perspective, but to my eye it seems a lot of them are funded (and covertly supported, in the administrative sense) by Big Pharma. I’ve often wondered how any group of people with a given disease might suddenly become aware of the new, fabulously effective, fabulously expensive drug that just appeared on the market, but it becomes a lot clearer when you realize that the drug companies are telling them what to think.
Precisely asked questions, Bill. The American 19-20th Century Analog Unscalable, irresponsible, unaccountable “late-stage-sickness-seeking-profiteering kabuki dance theatrics” sponsored by the Medical Industrial Complex is the root cause of the ills of our failed “healthcare system.” The corrupt pay to play schemes must end to save ourselves from the premature death and multi trillion dollar financial collapse destruction the American people are facing!