I represented the Patient Empowerment Network at Patient Access Network (PAN)’s 10th birthday bash in Washington, DC On October 22nd. Not the cake and candles kind, but rather, a full day Roundtable to talk about…what else…health care. PAN’s goal to collect and collate information on how four key groups – (1) patients, (2) health care providers, (3) drug companies and (4) specialty pharmacies* might partner better with each other to improve medical care and make it more affordable.
As you might expect with more than 80 participants, there were no clear-cut solutions.
In the last 10 years, PAN has provided a financial safety net for 300-thousand patients grappling with life-threatening or chronic diseases. PAN has paid out nearly three-quarters of a billion dollars to help those patients pay medical bills. And while it will continue that part of the mission, it recognizes that the medical landscape is changing. Treatments are more targeted and expensive, more people are getting health insurance, either through Obamacare or Medicaid expansion. But experts acknowledge most recipients, including me, don’t read part or all of their policies.
My table, among a dozen at the forum, reflected a microcosm of the four key groups. It included representatives three non-profits, an Oncology specialty pharmacy, one drug company and of course, PEN. After considerable debate, we concluded that a change in the Standard of Care for patients is needed. What does that mean? That health care providers – doctors, nurses, social workers, psychologists need to do a better job to communicate with patients, both at the beginning of treatment and the end of life. Johns Hopkins in Baltimore for example asks every new cancer patient these four questions, the answers of which can drive the type and timing of a patient’s treatment:
- What are you hoping for?
- What’s important to you?
- What do you worry about?
- What brings you joy?
Conversely, patients need to take responsibility for their care and ask questions! What are the options for treatment? How long? What does it cost? Side Affects? Ask, ask, ask. Push, push, push for information. It’s a patient’s right, a right many patients don’t exercise. A right many patients, especially older ones, don’t care to exercise. A reminder of the old saw, “You can lead a horse to water, but you can’t make it drink.”
Another barrier to strengthening these partnerships: TMI – too much information – thanks in large part to social media. And, not all Patient Advocacy groups play nicely together in the sand box. Often there is duplication of services, competing interests and competition for dollars.
As for those start-of-treatment or end-of-life conversations, who’s going to pay for that? Insurance? The patient? The doctor? PAN? Which led me to conclude that a key ‘partner’ was missing from Tuesday’s Roundtable. The insurance industry.
PAN had made a conscious decision not to invite insurance companies, whose premiums are the subject of much debate and angst, not only among patients but also Congress. Roundtable speakers and participants agreed that today’s health care policies are driven by economics, not health needs. From my perspective, the conversation was incomplete without insurance reps. Many may view insurance as the enemy, but they are a KEY, maybe THE key player in this debate and need to be part of this discussion.
Financial toxicity became the catch phrase of the day. Recently on “60 Minutes, MD Anderson Leukemia Chair Dr. Hagop Kantarjian said “high (drug) costs are harming patients.” However, a rep from Pharma, the high-powered drug company association asked, “What costs more?” The $100-thousand/year Hepatitis C drug, which can cure a patient, or monthly care in perpetuity without that medicine?
In other words, the value versus cost argument.
The Roundtable was a yeoman’s effort by PAN to collect in a diverse mix of advocates for patients, health care providers and the pharma industry to try to make things better. Under one roof. For an entire day. Each of the dozen tables offered ideas on barriers and potential solutions to health care’s thorniest issues. And while there are yet no definitive answers, PAN’s 10th birthday forum represented an admirable start to address improved patient access to and affordability of good health care.
(Carol Preston is a Washington DC-based communications consultant and eight-year CLL survivor)
*(Specialty pharmacies dispense high-end medicines for patients suffering life-threatening or chronic diseases like cancer, diabetes and Hepatitus C)