By Jennifer Jones, U.S.M.C., AAKP Board of Director, AAKP Ambassador
I want to thank AAKP for graciously extending the opportunity for me to share my perspective as a kidney disease patient on the Executive Order on Advancing American Kidney Health Initiative for our 3rd Annual Policy Summit.
AAKP granted me the opportunity to attend the signing of the Executive Order last year. My thoughts about it were hopeful because the order proved that the patient voice was heard. This was a result of many people and organizations including AAKP working together to bring about change. By witnessing that and engaging with fellow AAKP ambassadors passionate about spreading awareness and advocating on behalf of kidney patients, I knew that I made the right decision to become an AAKP Ambassador.
I do what I do, because I not only understand how important it is to be educated about the health care issues and treatment options as a kidney patient, but it is also important for all kidney patients to know what programs are out there to improve our quality of life, what technological advances are being made to give us more choices in treatment, where our elected officials stand on kidney disease and how they are supporting policies to ensure that all have access to quality care and treatment, and the ability to share our insight and experiences.
I am well aware of how fortunate I am to receive the quality of care I have as a retired United States Marine Corps (USMC) veteran and the wonderful fortune of receiving a kidney transplant from my amazing living donor, my kidney sister, five years ago. Because of this, I want to serve other kidney patients who do not have the same access to treatment, medication, education, and care that I have.
When I shared the news about the 2019 Executive Order to fellow kidney patients, I received some cynical feedback, and even outright dismissal by patients who never took time to read the order.
The 3 major reasons for these reactions were because of either (or all)
- They have a strong lack of trust in our federal government.
- They do not understand the massive detail that goes into achieving and implementing substantive change.
- They feel like their voice in all of this is insignificant or they are unable or don’t know how to contribute to those goals being achieved.
When a kidney patient has been presented with limited care choices since receiving their diagnosis, it is not surprising that there will be doubt that their situations will change. But now we are transitioning to a time when the needs of the patient come first.
Please allow me to help fellow patients and even nephrologists and healthcare professionals (who I hope are taking the time to share this knowledge with their patients) give another perspective to kidney patients who may not appreciate the true scope and positive implications of the Executive Order and show them how they can help shape and impact the changes that will be implemented.
A 2019 PEW Research Center report discovered that 75% of adults believe that American’s trust in the federal government has been shrinking. Some worry the government is doing too much, others say too little, and others mention the government doing the wrong things or nothing at all. If this is the case, then it’s vital that we as the subject matter experts of kidney disease reach out to our elected officials to educate them about our views and priorities.
The responsibility does not fall solely on our government to implement change. It is up to us to hold them accountable, to make sure they see the faces and hear the stories behind the disease so we do not get lost in the noise of Capitol Hill.
To better understand the role we play in implementing change, it’s beneficial to be aware of organizations and programs that AAKP works alongside, such as the Kidney Precision Medicine Project (KPMP), the Kidney Health Initiative (KHI), KidneyX, the Clinical Trials Transformation Initiative (CTTI), and the Center for Dialysis Innovation. They play integral roles on the kidney landscape and the Executive Order was specifically designed to enhance and accelerate these efforts. I must point out – each of these efforts puts the patient and their unique patient preferences at the center of their deliberations – just like the EO.
I have to admit that the last reason affects me the most.
When I share my kidney journey, I know that some considered it unusual. I have received exclamations of surprise and sometimes skepticism. It is not lost on me that when many visualize what an all-American United States Marine who has had multiple combat tours looks like; I am least likely to fit that description. But I fit the description of 35% of people diagnosed with kidney failure in the United States. I fit the description of those who are less likely to use home dialysis or receive a kidney transplant. I fit the description of many who believe that the decision to begin hemodialysis was selected for them, instead of being educated on all the treatment options available. If these individuals believe that, then why would they believe that they have any power in contributing to the goals of the Executive Order being met?
Therefore, AAKP launched the Decade of the Kidney™ because it provides all kidney patients and their caregivers a ten-year strategic view how to shape the battlespace on kidney disease and stay on offense, both here in the U.S. and globally. We each have the opportunity to become fully engaged community stakeholders in pursuing the improvement of early diagnosis and prevention treatments, access to education so individuals can make informed decisions about their treatment and care, greater access to kidney transplantation and technological advancements like the artificial kidney, and opportunities to provide patient insight to scientists, researchers, clinicians, and elected officials.
Implementation and support of the Executive Order have become even more crucial because of COVID-19. As of this recording, CMS’ Preliminary Medicare COVID-19 Data Snapshot shows that patients with End Stage Renal Disease (ESRD) had the highest rate of cases with 3,818 cases per 100,000 Medicare beneficiaries.
I wanted to close with this. I had to begin dialysis before my fistula had the ability to mature, so I needed a hemodialysis catheter. It was one of the most painful and invasive procedures I had ever experienced. Despite that, I became grateful because it was the connection to the machine that was keeping me alive. When I had it removed after transplant, I kept it. A good friend of mine made this case for me so I can have this as a reminder that if I can get through this, I can get through anything. In fact, I have had two more chest catheters since.
Yes, I am grateful, but I am excited about the focus on early diagnosis and prevention, less invasive and restrictive treatment options, and greater access to organ transplantation where one day preemptive kidney transplantation or an artificial kidney can be viable options instead of dialysis. I can’t wait to see these changes not only for those who fall under CMS but also kidney patients who receive treatment through Veteran Affairs (VA) and the Department of Defense (DOD). AAKP is heavily involved in the many positive changes underway at both the VA and DOD – and they are working closely with each department to involve more kidney veterans in their efforts.
It is shocking that it has taken 47 years to enact major change to kidney care in the United States. The Executive Order is the opportunity that we have fought for – it is based in bipartisan principles and the ideal that kidney patients have a voice in their own care and their lives are worth saving through better care and innovation.
This requires all of us to take part together in any way that we are capable of doing so. This is not a time to be divisive due to political affiliation, ethnicity, or gender because both COVID-19 and kidney disease do not care about any of that. The Decade of the Kidney™ provides the platform for patients, caregivers, nephrologists, health care professionals, innovators, and investors to unite in making these goals and more a reality.
I appreciate you for taking the time to tune in and for all that you do for the kidney disease community. Thank you.
Retired Marine Veteran Jennifer Jones’ kidney journey began while deployed to Afghanistan in 2011. In what felt like a blink of an eye she went from serving as a Combat Camera Videographer to being medically retired in 2013 due to being diagnosed with a rare autoimmune disease called Membranoproliferative Glomerulonephritis (MPGN) Type 1, Idiopathic. Jennifer admits that at first she was considered a “challenging patient” because at first, she couldn’t accept the situation that she was in. She realized when she began dialysis that she had to accept her current situation and focus on what was within her control, which is becoming her own advocate and taking charge of her health and well-being. Once approved for a kidney transplant Jennifer began an active pursuit for a living altruistic donor. On April 2, 2015, she received a kidney transplant and a new sister, a selfless person who did not know her but felt compelled to save her life after hearing her story. She is passionate about kidney disease advocacy, innovation, and education. Her wish for every kidney patient is to become their own advocate, be able to properly navigate their health care system, co-create a plan with their health care team which included the dialysis modality they are comfortable with, a goal towards transplantation (if possible), and positive coping strategies. Jennifer is also a member of the Quality Insights Renal Network 5 Patient Advisory Committee, American Kidney Fund Advocacy Network, and AKF Health Coach, and Veterans Transplantation Association.