When Jan White was diagnosed with stage 4 non-Hodgkins lymphoma in April 2016, she never intended to become a health care advocate − she just knew that navigating the murky waters of health care is challenging for patients with rare cancers.
“Today, I’m in remission and I should not be here,” the 59-year-old woman said. “At the time of my assessment, I was three weeks away from dying.”
White is a Newark native who survived a rare cancer that invaded her chest and spine. Since her diagnosis, she’s made it her personal mission to dedicate herself to helping others, specifically individuals with chronic or rare diseases.
Last month, White joined over 120 patients with chronic and life-threatening diseases nationwide at Capitol Hill to meet with lawmakers about expanding access to affordable healthcare programs.
Mike Herman, a 61-year-old Lewes resident who was diagnosed with multiple myeloma in 2013, also attended.
“One thing it did for me was feel very comfortable about reaching out to local legislatures and talking about the issues that are out there,” Herman said. “[The Congressional leaders] listened, always seemed attentive and hopefully it does something when they hear the same message over and over.”
The June 13 event, “We the Patients Fly-In,” was organized by Patient Rising Now, a national nonprofit organization dedicated to advocating for the rights and dignity of patients with chronic and rare diseases.
While meeting with lawmakers, one bill that was especially important to White and Herman was banning the use of Quality-Adjusted Life Years in all federal programs.
The Quality-Adjusted Life Years is a metric used to place a value on a person’s life, discrediting the worth of the disabled, aged, and those living with chronic or life-threatening illnesses, advocates said. In basic terms, the tool assumes that the life of someone who is very sick or disabled is worth less than that of a “perfectly healthy” person, according to the American Association of Kidney patients.org.
The bill, “Protecting Health Care for All Patients Act of 2023,” seeks to end the use of this metric, Herman said.
“That [bill] was a big one,” Herman said. “Instead of your doctor making a lot of these decisions, it’s a system that makes those decisions for you and I think that’s absolutely egregious because it puts little emphasis on those that need it most which are patients with rare diseases.”
What was some of the other legislation advocates were pushing for?
- The Drug Price Transparency in Medicaid Act would make a pass-through pricing model required for Pharmacy Benefit Managers — a third-party distributor of prescription drugs (ie. CVS Pharmacy). These managers set payment terms for pharmacies that administer drugs to patients and work as a middleman among drugstores, insurers, employers, and patients.
- The Protecting Patients Against PBM Abuses Act would delink Pharmacy Benefit Managers’ compensation from the price of a covered drug and prohibit Pharmacy Benefit Managers from steering patients to financially aligned incentives.
- The PBM Sunshine and Accountability Act would strengthen reporting requirements for Pharmacy Benefit Managers and the amount they receive in rebates, administrative fees, and clawbacks from pharmacies.
- The Help Ensure Lower Patient Copays Act would lower out-of-pocket costs by requiring that health insurance plans apply third-party payments, financial assistance, and discounts to a patient’s cost-sharing requirements, like a deductible.
Herman called the event “fantastic,” saying he plans to do some local lobbying for other healthcare issues important to patients in Delaware.
“[The Patient Rising Fly-In] was extremely important because without us advocating, all the politicians know is typically what they’ve been briefed or updated on,” he said, “but when they hear the patient’s stories, they are so powerful.”
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Contact local reporter Cameron Goodnight at cgoodnight@delawareonline.com, or by calling or texting 302-324-2208. Follow him on Twitter at @CamGoodnight.
