Advocacy / AMAC Action Advocacy Annual Reports

Inaugural Dan Weber Patient Advocacy Award Goes to Champion of Affordable Access

By – Terry Wilcox

AMAC founder Dan Weber was a great champion of patient-centered healthcare, characterized by transparency, choice, access, and affordability. That’s why Free2Care, a coalition of over seventy thousand physicians and thirty-two member organizations, including AMAC, decided to name its new patient advocacy award after him. The winner of the inaugural Dan Weber Patient Advocacy Award is a deserving recipient: Darla S. Bell.

Darla meets the standard set by the award’s namesake. She amplifies the voices of patients with rare and chronic diseases who often feel powerless to overcome the enormous healthcare barriers facing them. She is an inspiration to patient advocates at this time when they’re so desperately needed as pending legislation before Congress threatens their care.

Darla has a chronic condition requiring a specialty medication, so she knows firsthand the hurdles patients face. She is a leading advocate against the use of Copay Accumulator Adjustment Programs (CAAPs), which are becoming prevalent in health plans across the country.

CAAPs forbid copay assistance from counting toward patients’ deductibles. Copay assistance is a vital financial lifeline from drug makers for countless patients who otherwise can’t afford their medications. By not allowing copay assistance to apply to deductibles, CAAPs force patients to pay for the total cost of their prescription drugs mid-year when their copay assistance runs out. CAAPs impose a financial burden that’s insurmountable for some patients while allowing health plans to double-dip, earning twice as much pre-deductible revenue.

CAAPs are part of a growing trend of healthcare cost-shifting onto the backs of patients. They disproportionately hurt the sickest and most vulnerable people in society, whose medication needs are most pressing.

Darla has led the charge against the proliferation of CAAPs. She fought back personally when they were adopted by her health plan, threatening her access. She wrote an op-ed in the Austin American-Statesman educating the public about their pernicious rise. And she advocated for Texas state legislators to pass legislation banning them.

Darla shows that patients can help change American healthcare for the better. Voices like hers are needed now more than ever to inform pending policy changes affecting patients.

For instance, Congress recently passed an infrastructure bill delaying a prescription drug rebate rule that could significantly reduce medication prices for Medicare patients. The rule requires middlemen in the drug supply chain to pass along rebate discounts they receive from manufacturers directly to patients at the prescription counter. Given that these rebates often make up around half the price of a drug, ensuring they reach the hands of patients who need them would significantly reduce costs and help those struggling to pay for medicines.

Congress is also considering separate legislation that would implement government price-setting on medications for Medicare plans. According to the nonpartisan Congressional Budget Office, such price-setting would result in between twenty-one and fifty-nine fewer medicines being brought to market. This outcome is unacceptable for those with rare and chronic diseases, who depend on the prescription drug pipeline of new medications to save their lives and livelihoods. The best hope for patients and caregivers like Dorothea Lantz from Miami, whose son has a rare disease known as Prader-Willi syndrome, is a breakthrough medication. Price-setting would make such new treatments less likely.

By following Darla’s lead and telling their stories, patients can influence these bills and other proposals affecting them. It’s easy for patients to feel like they have no voice at all, but in reality, their compelling stories are the most potent form of advocacy. They have more impact than research papers or “expert” advice ever could. Stories connect with people on a far more profound and emotional level than any other form of communication. A good place for patients to begin their advocacy journey is by simply telling their stories to their elected representatives, whose contact information can easily be found online.

Those impacted most by healthcare policy should be front and center when these policies are shaped. Darla shows patients how this advocacy can be done. Patients need an army of Darla Bells and Dan Webers to fight back against healthcare trends that threaten their care. This award can convince more patients to join the fray.

Terry Wilcox is the executive director of Patients Rising and host of the Patients Rising Podcast.

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