Prescription for Better Access

Prescription for Better Access Podcast
Episode: Patient Voices: The Value and Challenges of Access

In this episode, co-hosts Mark Hansan and Dr. Scott Howell interview two patients who share their personal journeys, how medicine has helped them, their challenges related to access, and how both are making a difference for patients. 

The first guest is Donna Cryer, a graduate from Harvard and Georgetown School of Law.  Her powerful interview starts with her being grateful to be here when almost 1,200 days ago, while in law school, her doctors told her she only had 7 days to live. Donna had an underlying health condition that damaged her liver to the point that she required a liver transplant which she she was blessed to receive.  Related to accessing medicines, Donna explains that after her transplant she was taking 17 different medications and thankfully she only needs a few of them today. She starts with the importance of asking “What are we trying to get access to?” because as a patient it is important to look at the scope of what is needed including medications and treatments, devices, services, types of care and other support. In terms of navigating the challenges of access, Donna jokes that she is thankful she finished law school.  This illuminates the complexity of the existing healthcare system and the importance of learning the different drivers and entities in healthcare so that she can advocate for herself and others. She explains that her skills and background have helped her navigate and even push back on the insurance industry when there is a denial or other barrier.  Donna’s experiences overcoming access barriers, led her to create the Global Liver Institute which has become her life’s work to help other transplant patients learn to advocate for themselves so they can live a healthy and fulfilling life.  Donna explains the founding of GLI and its role in helping patients post-transplant to ensure they have the knowledge and resources in a changing healthcare environment.   

The second guest is Reid Jewett Smith, who is an experienced teacher and recently earned her Ph.D. from Boston College. Reid explains that she was diagnosed with cystic fibrosis at the age of five and further describes how CF impacts the body.  She shares what it was like to grow up with CF and how she was constantly striving to stay healthy enough so that she could benefit from the next innovative treatment or medication.  Reid shares that she was aware of the new modulators that were in development by Vertex Pharmaceuticals but never qualified for the clinical trials while in high school or college.  She explains that she had access to the first generation of modulators and thanks to the rapid pace of innovation, within a few years she was taking Trikafta, a combination modulator that has changed her whole life and given her a future she never thought she would have.  Reid describes the significant decrease in the daily health maintenance, the reduction of hospitalizations after starting Trikafta and even a reversal of infertility that allowed her to surprisingly become pregnant.  Reid acknowledges the high cost of Trikafta and challenges with access and affordability for many people with CF.  Reid agreed with Donna that maintaining access starts with knowledge and then shares the importance of extreme diligence in planning when there is a change of insurance because of the ripple effect it can have on all aspects of access.  

Next, Reid and Donna discuss their perspectives on copay programs.  Reid starts with how insurance providers are still covering Trikafta, including passing along a costly copay requirement for the patients.  To help patients manage the out-of-pocket copay expenses, Vertex has always offered a generous copay program.  However, recently Vertex announced significant changes to the copay program to adjust to the copay accumulator and maximizer programs being implemented by the insurance industry. Donna explains there have been recent studies looking at the distortion that can occur as a result of copay programs. She talks about the importance of a fair price for the drug while also allowing the manufacturer achieve a fair return. She describes a layered complexity within the drug payment process that can sometimes allow a gaming within the system. 

As patients and patient advocates, Donna and Reid offer their perspectives on the stress points in the healthcare system including with the healthcare employees themselves.  They have witnessed the burnout of physicians and nurses and believe there aren’t enough nurses or healthcare workers.  We need to take on and train new healthcare workers to alleviate this problem. On the patient side, there is too much turnover in personnel which makes the patients have to retell their whole story each time and creates a lack of continuity. Your employment is also tied to your insurance, so if there are any shifts in employment then that will lead to changes in insurance. Navigating and reading hospital bills is all overwhelming and draining, especially when you don’t feel good. 

Donna and Reid share their positive experiences working with manufacturer-sponsored programs including Hub Services.  They also offer a perspective on the gaps in access and affordability especially related to the intertwined and competing interests that lead to an unnecessarily complex process.  The process is so complex that it can lead to inequities in healthcare.  While there has been a societal shift in general about equity and inclusion, health care continues to leave too many patients behind.  Donna recommends changes should start at the top of every organization including ensuring equality on governing boards.  She discusses that health insurance is interconnected with childcare, food, and housing, and we need to better integrate support for all of these to make a difference for patients.  

Lastly, Donna and Reid both share their “prescription for better access” and Reid shares information about her efforts on behalf of the organization, Disability:IN. 

Timestamps: 
1:14 - Introduction to today’s episode. 
2:59 - Donna Cryer introduces herself and tells her story.
4:28 - Donna’s experience accessing medications. 
6:23 - Donna’s experience with insurance in navigating medication. 
8:56 - How Donna leads a patient support group for liver disease. 
11:15 - Reid introduces herself and tells her story. 
13:14 - Reid’s experience benefiting from new modulators from Vertex. 
16:22- Experience taking Trikafta. 
17:40- Thoughts on Vertex announcing changes to the copay program. 
19:36- The potential distortion of copay system programs. 
22:38- Possible stress points in the healthcare system and potential solutions. 
26:34- Experience with manufacturer sponsored support systems. 
29:17- Advice and gaps they wish to tell manufacturers. 
33:00- Inequities in healthcare. 
36:50- What’s your prescription for better access? 
41:10- Reid’s involvement in an organization called “Disability:IN.” 
43:58- Closing remarks. 

Links: 
Learn more about Donna Cryer. 
Learn more about Global Liver institute. 
Learn more about Reid Jewett Smith. 
Learn more about Disability: IN. 
Learn more about Dr. Scott Howell.
Learn more about Mark Hansan. 
Comments or suggestions for Mark or Scott: comments@prescriptionforbetteraccess.com