OPINION:
When I founded a charity 29 years ago to help seriously ill patients afford health insurance and medicine, I knew there would be obstacles. However, I never imagined the federal government would be one of them. After all, our mission was to patch holes in coverage that Medicare and Medicaid were not filling.
Yet, we are now fighting for our life against the U.S. Department of Health and Human Services. And that is why we just filed a lawsuit against HHS for violating our constitutional rights. We need to win — or patients will lose, or even die.
Unbeknownst to many, there is an entire charitable sector helping patients with expensive chronic illnesses pay for insurance premiums and prescription co-pays. And we are not talking about a small number of Americans — these charities help nearly 1 million people.
The average income of patients my charity helps is between $34,000 and $55,000, requiring an average of $8,873 in annual assistance, which often averages 23 percent of their annual income. Most of these patients do not qualify for Medicaid or Medicare at all.
Consequently, without support, they would have to sacrifice their financial security, homes, and life’s necessities to maintain treatments. For those unable to sustain their treatments, they inevitably end up in emergency rooms, or worse. Nonprofit charities protect patients from these fates. And we depend on donors for both funding and the information we need to identify promising drug treatment and patient populations.
Donors to these charities include disease treatment centers, hospitals, disease-specific charities, medical societies, pharmacies, individuals, state governmental entities, and pharmaceutical companies. We particularly rely on pharmaceutical companies because they are the largest donors to this sector and have the greatest knowledge of the patients they serve and diseases for which they provide treatments.
Since 2002, HHS has provided guidance to charities preventing the appearance of donor kickbacks when delivering financial assistance to Medicare and Medicaid beneficiaries. The guidance for each charity seeks various safeguards to ensure the charity does not interfere with patient and provider choices of treatments.
For example, HHS understandably does not want donated funds from a particular company steering patients toward that company’s drugs. We have always welcomed this guidance because it has assured stakeholders that we follow best practices.
In 2017, however, HHS imposed guidance on us that is unheard of historically and unconstitutionally prohibits our protected free speech. Incredibly, this new guidance prohibits us from asking donors and potential donors for information that only they would possess about a wide range of issues, including diseases, medications, and patient populations.
The vast majority of the time, they have a monopoly on the information, and we must be able to ask about these issues to do our job. We need to know this information to create programs to help patients, and we will not be able to do so if this guidance remains unchanged. We are unconstitutionally gagged.
Charities have a First Amendment right to engage in conversations with donors and experts to gather truthful and non-misleading information we need. We are not challenging the system that provides guidelines, and we support reasonable restrictions that HHS imposes on us and the sector overall. But, we and the courts cannot tolerate overly broad and unreasonable rules that needlessly sacrifice our mission to an overzealous bureaucracy that has lost sight of its own mission.
To be clear, this is not some theoretical harm. Our programs are suffering. We have lost 17 percent of our funding — down from $100 million in 2017 — since HHS imposed this new guidance. Six programs that we have created since the new guidance came down for patients with sickle cell, diabetes and Parkinson’s Disease have gone unfunded.
Even worse, there is no realistic alternative. Pharmaceutical companies are not giving away enough free drugs or dropping their prices, and the government has not fixed the holes in Medicare and Medicaid that charities like mine were established to address.
Most importantly, this is not the charity’s loss. Americans who struggle every day to cope with serious illnesses while providing for their families are this unconstitutional action’s true victims. It is for them that we fight and turn to the courts for help.
The HHS website proclaims it serves to protect the health and well-being of Americans. It declares they foster advances in public health and social services. Sadly, HHS is doing the opposite to some of the most vulnerable patients in America. Bureaucratic fervor has swallowed sensible oversight. While protecting some Americans, it is harming others. This must stop.
• Dana Kuhn is the founder and president of Patient Services, Inc.
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