Crowdfund Health Research by Hormones Matter

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Each of us will be a patient at some point in time. Each of us will need credible health information. With the current trajectory of commercial medicine, getting that information is becoming more and more difficult. It’s time for a new model, one where patients drive and crowdfund research.

Industry Conflicts of Interest

It has become abundantly clear in recent years that there are serious flaws in the way medical research is conducted. Most of these problems are directly linked to the deeply entrenched financial conflicts of interest manifest in modern medical research. We cover this topic regularly and for more background, click here, here, here, here, here, and here. The solution is simple on its face, fund third party research. Presumably, that research would come from a governmental entity or through academic institutions and provide not only third party safety and efficacy data but oversight of industry sponsored research. With industry funded lobbying at every level of government, ours and those abroad, however, the prospect that any of the current governmental entities tasked with reviewing and regulating industry is weak to non-existent. In the US, the pharmaceutical industry is the single largest supporter of both political parties, contributing nearly 3 billion annually and no less than three lobbyists per elected official, all to ensure a favorable environment for its products. Similarly, with critical financial endowments for academic institutions at stake, endowments that ensure the very survival of a research institution, controversial research that questions the safety or efficacy of a benefactor’s product is all but impossible.

Hens Meet Fox

More than just a game of money and power, the rampant entrenchment of industry interests over public well-being has sobering consequences – prescription medications are now the 4th leading cause of death. And, those deaths are not from abuse, but from drug-drug interactions and adverse reactions to properly prescribed and used medications; medications that presumably received safety and efficacy approval by the governmental entities tasked with such oversight.

In essence, those deaths, over 100,000 annually in the US, are directly attributable to the lack of non-industry sponsored safety and efficacy data. Those deaths are directly attributable to the lack of regulatory oversight by governmental entities. Those deaths are directly attributable to all of the current systems that keep real data from the public. Those deaths are directly attributable to giving the fox the keys to the hen house and then wondering why it feasts on the chickens. We can expect nothing less when an industry has total control and no liability. It’s an enviable position if you are within that industry, but if you are not, and indeed, if you are one of the millions who has lost a loved one or has experienced the suffering elicited by an adverse reaction to a medication, it is all but hopeless.

As grave as this situation is, what we have to understand is that this did not happen overnight. The relationships that industry sponsors and that are so amenable to siding favorably with pharma were fostered diligently for over a generation, and all the while we watched and let it happen. We believed in the myth that our doctors were super human, medications were safe and effective, or otherwise would not be on the market. We believed in our government’s ability to protect us from the bad actors. Certainly, ‘my doctor wouldn’t suggest this medication if it were dangerous,’ we told ourselves.  Certainly, this drug wouldn’t be on the market if it were dangerous. Certainly, if the study was published in a peer-reviewed medical journal, then it must be a good research because only the best studies make it to those journals. Right?

Well, not so much. Hens meet fox.

The Power of Social Media – The Power of the Patient

There is hope, long term hope, but hope nevertheless. With the advent of the internet and most especially social media, controlling public opinion is far more difficult than it once was. The edifice of medical marketing is beginning to crumble in the face of social media; where one mom’s voice or one patient’s story is no longer cloistered behind a veil of mysterious side-effects, but blasted virally across the social sphere eliciting comments and connections by other moms, other family members, other patients. Hell hath no fury like parent whose child has been injured unnecessarily by a medication or a vaccine. And try as they might to disparage the parents and the injured, using social bots, paid internet trolls disguised as patients and patient groups and highly paid medical experts who extol the party line, the corporations who profit from the sales of these products cannot quiet the uproar; but they can outspend it, significantly, and therein lays the problem.

These companies have billions of dollars to allocate toward maintaining their revenue streams. Even multi-billion dollar class action lawsuits are simply the cost of doing business and can’t make a dent in their operations. The companies and organizations, who seek to counter this power are more often than not, unfunded or woefully underfunded with no clear pathway towards funding. The traditional funding channels have been usurped by the industry in power. Even non-profits rely on industry money to survive. To question the safety or efficacy of a multi-billion dollar product, would be the death knell of a small company or not-for-profit.

From the medical consumer’s standpoint, how can we have any expectation of research or journalistic integrity when the organization’s largest advertisers or benefactors are the very companies they should be critiquing? It is simply not possible.

A New Model: Crowdfund and Crowdsource Research

And so, I propose a new model to fund medical research, utilizing the strength of social media and power of numbers: crowdfunding. We crowdfund fund tech, the arts and pet science projects, why not crowdfund medication adverse events research – and along the way, crowdsource it too.

If patients, physicians and others want data and information that is not biased towards the industry’s products, research that listens and tests the patients’ and physicians’ concerns for safety and efficacy, then patients, physicians and other interested parties ought to fund the research, because, really, when you think about it, who else will pay for these studies?

This might be a hard pill swallow; why should patients or physicians pay for research? Shouldn’t that be someone else’s responsibility? Perhaps, in an ideal world data would be free, but it isn’t. It costs money to run a study, lots of money, and the reason there are few studies in the areas most medical consumers deem necessary is because there is no promise of return to the investors. What investor really wants to know that the product they are supporting is neither safe nor effective? Indeed, it is just the opposite, tell them it is the best new drug since the beginning of time. This is a fundamental precept of business, sales, and the pharmaceutical industry; highlight the good, downplay the bad. This is how one gets investment dollars in the first place, by telling the story that the investors want to hear, by highlighting, and in many cases, over-inflating the benefits of your product, whatever the product happens to be.

So we need a new model for all of the patients and physicians who do not want to judge healthcare products based on industry sponsored data. We need third party companies, a consumer reports of medical science, to evaluate existing research and conduct new studies. These companies and organizations should be vested in providing quality data, period. The data and the quality of the information should be the products. There should be no connection to the companies, research, or products they evaluate.

Who will fund such an enterprise? There is no impetus, nor should there be any, for pharma to fund companies or organizations like these. So it is up to us, the patients, to take on this responsibility.

Remember, each of us will need medical care at some point across our lifetimes. Some of us, will need more than others. And a few, have already experienced the dangers and the suffering the comes from the critical lack of unbiased data in medical care. If we want to change the system, if we want to get better health information, better health research, it begins with contributing to organizations like ours. There are many of us out here, struggling to do what is right and survive.

If everyone contributes a little, then we begin to make progress in this battle, but if each of us writes it off as someone else’s responsibility, then we get what we pay for; avoidable adverse reactions and poor health.

Here’s our crowdfunding campaign. Chip in a couple dollars or more if you can.

Fund the Fight  – Support Research

We’ve set up an unsubscription model to fund our education and research programs. We call it an unsubscription because it is not really a subscription in the true sense. It’s just a mechanism to fund the work, while maintaining our commitment to open access health information on Hormones Matter. By purchasing an unsubscription you are supporting our continued operations and research.

If you’d like to support or commission a study on a specific medication or surgical procedure, we can do that too. Contact us.

Buy an Unsubscription Now

$12.00 per year – $1.00 per month




 

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$240 per year – $20.00 per month




 

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About Lucine Health Sciences and Hormones Matter

Help us bring critical medication adverse event data to the public, help fund a study, by contributing to our Fund the Fight program.

Lucine Health Sciences, the parent company of Hormones Matter, is an unfunded Benefit Corporation (B Corp), created and run by Dr. Chandler Marrs along with a cadre of dedicated volunteers. We know the work we do is important and needed and so we’re doing it anyway, despite the lack of funding. We’re bootstrapped to the nth degree, but determined to fill the critical data void in healthcare, one study at a time.

We believe patients and physicians have a right to know what the true range, frequency and severity of medication side effects and adverse reactions really looks like. We believe that this type of information should be readily available before one makes a medication decision. Unfortunately, the companies who manufacture and distribute these medications have a vested interest in keeping those data out of the public eye. And so, we decided to solve that problem by going directly to you, the medical consumer, for the data and for some of our funding. After all, you have a vested interest in having these data available. We want to make those data available, but first we have to design, collect and analyze those studies. That requires resources we don’t currently have, but together we can make it happen.

Before you decide to contribute or not, think about this: might you and your doctor have chosen a different medication had more rigorous side effect data been available prior to your illness? If the answer is yes, support the research and bring these data to light.

Thank you for your support.

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