From the Individual's Point of View: Where Stories Shape Solutions!

Through heartfelt stories, insightful op-eds, and firsthand experiences, our platform serves as a beacon for understanding the profound significance of Medicare's commitment to safeguarding access to essential treatments. Whether it's a personal journey of resilience, a poignant reflection on the importance of medication access, or a call to action for policy reform, each narrative shared here adds a unique layer to the ongoing conversation about healthcare equity and patient-centered care.

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Navigating Genetic Waters: A Black Man's Perspective on Kidney Health and Medication Access
Dirrell Jones, J.D.
Texas Kidney Foundation Patient Advocate

"Patient advocates like myself, alongside healthcare providers and community leaders, must stand united against potential restrictions on vital medications. We need to amplify our voices to ensure decision-makers understand the real-life consequences of such actions, particularly on the African American community. It's not just about medications; it's about the right to a healthy life, free from unnecessary obstacles."

Learn more about Dirrell's story

Black History Month is a time to reflect on the triumphs and challenges of the African American community. It is also an opportunity to shed light on the specific health information and challenges that affect us uniquely, helping us gain a better understanding of the healthcare we need to thrive.

In the intricate tapestry of our genetic makeup, the APOL1 gene holds a unique place, impacting the health of countless individuals with African ancestry. Studies reveal that carrying two variants of the APOL1 gene significantly elevates the likelihood of developing kidney disease, emphasizing the importance of understanding genetic factors in healthcare.  This isn't just scientific jargon; it's a stark reality that demands our attention and action.

Some individuals have a genetic variation in one or both of the APOL1 genes. Each person has a set of APOL1 genes that create proteins that assist in the body’s immunity system. The APOL1 genetic variation is a significant contributor to kidney disease in people of Caribbean and sub-Saharan African descent. This genetic variation developed as protection from African trypanosomiasis, also known as African “sleeping sickness,” that is spread by the bite of the tsetse fly.

Growing up, I was surrounded by 14 aunts and uncles and 50+ first cousins. We openly discussed health. It was no secret that dialysis and kidney disease occurred within the family. In my family, there have been a total of 16 deaths related to kidney issues on my father's side. I believed that I would not have any kidney issues because I had purposefully stayed away from alcohol, ate healthy foods, and became a triathlete. When I received my diagnosis in 2018, it was a surprise. All of my efforts were unsuccessful against APOL1. People who inherit mutations in both of their APOL1 genes have a higher chance of developing kidney disease, including, but not limited to, focal segmental glomerulosclerosis (FSGS), of which I have received a diagnosis.

My deceased family members navigated a kidney disease landscape where access to information and quality healthcare was a challenge. I did not have the same experience. Scientific journals and articles were readily available to me. I had resources that allowed me to control my treatment. I had information that let me recognize when, in my opinion, I was being “rushed” into dialysis. I decided not to go on dialysis until it was absolutely necessary. My reading had shown me that the survival rate and likelihood of acceptance for a transplant are greatly reduced when FSGS patients go on dialysis. 

Knowing about the APOL1 gene allows us to take charge of our health narratives. It's a vital piece of information that should be accessible to all, breaking down barriers that have historically hindered our community's access to comprehensive healthcare. The reality is stark – African Americans face a higher prevalence of kidney disease. It's not just genetics at play; it's a complex interplay of socio-economic factors, healthcare disparities, and limited access to timely and preventive healthcare.

Immunosuppressants
For those who have navigated the challenging waters of kidney disease, the prospect of a transplant offers hope. However, this hope is intricately tied to access to medications that can make or break the success of the transplant. Immunosuppressants are mandatory in preventing organ rejection. It is not optional. It is a routine that must be complied with at the same time each day without fail for the rest of your life. Immunosuppressants are a lifeline that must be extended to the African American community, where the prevalence of kidney disease is pronounced. As a black man living with kidney disease, I have navigated the healthcare system pre- and post-kidney transplant process. As a patient advocate with the Texas Kidney Foundation, I find it imperative to share insights into the politics of healthcare.

Understanding the APOL1 gene is only part of the equation. The broader issue lies in addressing disparities in healthcare, ensuring that all members of our community have access to the medical resources they need. This brings us to a critical juncture – the importance of patient access to vital medications, particularly immunosuppressants, falling within the six protected classes.

The Six Protected Classes Policy
Medicare’s “Six Protected Classes” policy is a safeguard for kidney transplant recipients getting the medications they require. Additionally, this policy goes beyond just addressing those who have had an organ transplant; it recognizes the challenges faced by those dealing with cancer, mental health challenges, HIV/AIDS, epilepsy, Parkinson’s disease, and lupus. At its core, the policy ensures that Medicare prescription drug plans encompass "all or substantially all" of the necessary drug classes crucial for the survival of individuals navigating life with kidney disease, highlighting the diverse range of conditions it addresses.

There are forces attempting to limit access to crucial medications by the most needy members of society. Pharmacy Benefit Managers (PBMs) , currently under scrutiny on Capitol Hill, are discreetly opposed to the access requirements of the Medicare’s “Six Protected Classes” policy. The Medicare Payment Advisory Commission (MedPAC), tasked with advising Medicare on payment policy, has suggested that insurance companies could benefit from being relieved of their current obligation to provide protected-class drugs. This is not merely a policy matter; it's a threat to our well-being. As we celebrate Black History Month, we must recognize that our health narratives are interwoven with the policies that govern medication accessibility.

Patient advocates like myself, alongside healthcare providers and community leaders, must stand united against potential restrictions on vital medications. We need to amplify our voices to ensure decision-makers understand the real-life consequences of such actions, particularly on the African American community. It's not just about medications; it's about the right to a healthy life, free from unnecessary obstacles.

​This month, and every month, should serve as a call to action. Let us not only celebrate the resilience and achievements of our community but also commit to shaping a healthier future. Understanding the APOL1 gene is a step toward empowerment, but true change comes from dismantling healthcare disparities and securing patient access to crucial medications. As a black man and a patient advocate, I stand with my community in the fight for equitable healthcare – a fight that transcends history and paves the way for a healthier, more hopeful tomorrow.