- BIOETHICS FORUM ESSAY
Masked Marketing: Pharmaceutical Company Funding of ADHD Patient Advocacy Groups
In 1971, the United Nations passed a resolution prohibiting its member nations from advertising psychotropic drugs to the general public. More than 40 years later, this resolution has done little to halt pharmaceutical companies from marketing stimulants as treatments for attention deficit-hyperactivity disorder. The means by which, and the ethical dilemmas involved when, pharmaceutical companies market their products was discussed earlier this month at the annual PharmedOut conference, which investigated how industry influences medical discourse.
Alan Schwarz, the author of ADHD Nation, exposed how drug companies have, often covertly, sponsored educational resources and patient advocacy groups. These groups face a difficult conflict of interest: by accepting drug company funding, they can increase their reach to those looking for resources; however, their neutrality is compromised, particularly when they fail to disclose the funding source. The New England Journal of Medicine reports that pharmaceutical industry-sponsored advocacy groups may be likely to support drugs, as well as policy proposals, that cater to their sponsors’ financial interests.
One such pharmaceutical company is Shire. One of the British company’s highest-grossing products is Adderall, a stimulant used in treating ADHD that has earned the company billions in sales to date. Shire sponsors ADHD patient-advocacy groups, like Children and Adults with ADHD (CHADD).
CHADD and other pharma-funded ADHD resources may be very beneficial to those affected by ADHD. They provide key information, training opportunities, in-person and online support, and many other resources. However, what are the risks inherent in using resources from groups sponsored by drug companies, particularly when these groups do not disclose their funding in a transparent manner?
One risk is that industry-funded patient advocacy groups may be likely to endorse the products of the companies that sponsor their operations, which may lead to harmful effects. One such group, the American Pain Foundation (APF), allegedly downplayed the risks and exaggerated the benefits of opioids in publications for patients and lawmakers. An investigation by the U.S. Senate Finance committee found that the APF “may be responsible, at least in part, for [the opioid] epidemic by promoting misleading information about the drugs’ safety and effectiveness.” Under legal scrutiny, this organization has since shut down.
PharmedOut team members Alycia Hogenmiller, Adriane Fugh-Berman, and Alessandra Hirsch described how another industry-sponsored patient advocacy group, Even the Score, funneled the “libido-enhancing” drug flibanserin through the FDA approval process, despite questionable evidence of therapeutic value. While Even the Score was founded by a pharmaceutical company and CHADD was formed prior to Shire sponsorship, such patient advocacy groups are inherently compromised in their stances by catering not just to their affected populations, but also to the companies that seek to sell products.
A further, and perhaps larger, risk is that industry-funded “awareness” campaigns often seek to identify previously overlooked individuals who have ADHD-related symptoms in order to increase the market for their products. Expanding the market for ADHD may be particularly profitable because the condition lacks a conclusive diagnostic test. Instead, ADHD is diagnosed based on the presentation of symptoms, which, in more mild forms, can be found in many individuals. These symptoms include absent-mindedness, anxiety, and aggression. Though these awareness campaigns may lead to greater numbers of ADHD-affected individuals receiving treatment for their condition, the attraction of a larger market may also lead to greater misdiagnosis of unaffected individuals.
Shire sponsors online ADHD self-assessments. Conducted correctly, self-assessments may be helpful tools to identify the possibility of ADHD. However, many of the questions on these questionnaires are vague enough to convince healthy test-takers that they have the condition. And with increasing numbers of Americans searching for medical information online, such tests may encourage patients to seek ADHD diagnoses from their medical providers.
Another way these sponsored advocacy groups expand awareness is by providing educational resources for teachers on ADHD identification management and how to spot ADHD in the classroom. Though there is no published data on the impact of these sponsored resources, teachers may recommend to parents that they have their children screened for ADHD, especially children who are disruptive in the classroom.
These awareness campaigns and marketing techniques may result in financial gains for Shire and other pharmaceutical companies. But they may also contribute to the misdiagnosis of many children. While most experts believe that ADHD actually affects around 5 percent of children, approximately 11 percent of children in the U.S. have been diagnosed with the condition. If those experts are correct, then many American children, as well as more recently, American adults, have been unnecessarily medicated as a result of an incorrect ADHD diagnosis.
Adderall and other stimulants have had profound and positive impacts on many individuals suffering with ADHD. However, education resources and advocacy groups ought to advocate for ADHD patients and families, not for special interests. By accepting, and particularly by not disclosing, industry funding, these information sources cannot claim to offer unbiased support. Through their backing of these groups, pharmaceutical companies have been able to circumvent the U.N. recommendation that they not advertise stimulants to the general public.
Marnie Klein is a 2017 graduate of Georgetown University. She will join The Hastings Center as its communications assistant in July.