Lori Hartwell has lived with kidney disease since age 2, has survived 40-plus surgeries, 13 years of dialysis and is now living with her fourth kidney transplant. Lori founded the patient-led Renal Support Network in 1993 to instill “health, happiness, and hope” into the lives of fellow patients. She is the author of Chronically Happy – Joyful Living in Spite of Chronic Illness, an inspirational guidebook for handling lifestyle and numerous other non-medical issues that come up in the course of chronic disease. She also is the host of the KidneyTalk Podcast.
The founder of the Renal Support Network discusses why patients with chronic kidney disease want Congress to change Medicare policy to allow payment for oral treatments for anemia caused by iron deficiency.
I have lived with chronic kidney disease (CKD) since I was 2 years old. For over 5 decades, I have learned to persevere over the many challenges the disease has thrown my way. Having endured over 13 years of dialysis and 4 kidney transplants, I wanted to pass along my knowledge to help others in the kidney community manage the enormous burden of the disease. This is the reason I founded the Renal Support Network, or RSN. The organization is designed to engage and educate my peers, to give them hope, and to offer them a place where they can connect with others like themselves.
Throughout the years, I have learned to advocate for myself to access quality care, therapies, and the latest treatment innovations. I now use my voice and experience to help my peers do the same. Since founding RSN in 1993, I’ve worked with the broader kidney care community—including patients, family members, care-providers, and policymakers—to achieve positive change.
And, fortunately, through coordinated advocacy efforts, we’ve accomplished enormous success. From passage of the Lifetime Immunosuppressant Act to the Kidney Innovation Accelerator (KidneyX) initiative, the kidney community has made critical progress to advance our priorities and support those impacted by CKD.
Even more recently, patients grappling with End Stage Renal Disease (ESRD), or kidney failure, celebrated when the Biden administration took an important step to remove access barriers for donated kidneys. The administration’s final rule governing coverage for organ procurement will strengthen the performance of Organ Procurement Organizations (OPOs), which play a vital role in providing patients access to a life-saving transplant. The end result, we’re confident, will allow more Americans to donate—or receive—lifesaving organs.
But despite enormous progress, our work is not done. The incidence of kidney failure continues to rise in the United States, underscoring the critical need for proactive policy solutions oriented towards the prevention and treatment of CKD. Here, the Medicare program has an important role to play.
As the largest payer in the United States, Medicare must take key steps to reach individuals progressing toward kidney failure sooner. This will allow people to improve their quality of life by better managing their condition, and, critically, help them slow the progression of CKD before it reaches turns into ESRD.
On this front, a great place to start is to extend coverage for treatments that address conditions associated with CKD, such as therapies for early iron deficiency anemia (IDA). The condition occurs when the body fails to generate enough hemoglobin to carry oxygen-rich blood cells throughout the body. This impacts a significant number of individuals with CKD, including me. While IDA is normally treated with IV iron infusions in outpatient care settings, the process can be costly, time-intensive, and stress-inducing. Despite FDA-approved oral equivalent alternatives, an IV iron infusion is the only treatment Medicare funds for people with CKD with IDA.
Anemia is a devastating condition. It depletes your energy, making you feel tired to the point where it can be difficult to keep up with daily activities and normal routines. I was severely anemic for 12 years. I found myself unable to muster the energy to go to work and perform basic daily activities. If you’ve ever had a severe flu and felt too tired or cold to get out of bed, that is what anemia feels like.
A combination of iron, essential to treating anemia, and sometimes erythropoietin stimulating agents (ESAs) is used to avoid blood transfusions. Transfusions can prevent people with CKD from getting a kidney transplant because the transfer of antibodies from the blood donor can make a compatible kidney match nearly impossible, something I struggled with for years while trying to find a suitable donor as a result of multiple transfusions.
And this is where our government is failing individuals suffering from IDA with CKD: while most insurers cover a simple, orally administered drug that treats IDA, Medicare unfortunately has failed to cover it. As frustrating as this is for patients with CKD and their doctors who prefer a pill at home over lengthy infusions in a hospital, concerned lawmakers in Congress are already working to expand coverage of this oral therapy. The Renal Anemia Innovation Support and Expansion (RAISE) Act, recently introduced by Representatives Tom O'Halleran, D-Arizona, Markwayne Mullin, R-Oklahoma, GK Butterfield, D-North Carolina, and Larry Bucshon, R-Indiana would revise current Medicare policy to expand coverage of this potentially life-altering oral therapy, giving patients the option to treat their IDA within the comfort and safety of their own home.
When we take into consideration the tens of thousands of Americans who for one reason or another fail to get a life-saving kidney transplant, we must act responsibly to analyze the situation and find solutions that address the many issues people with CKD face on a daily basis. The RAISE Act represents just one of the many possible policy solutions that, as a whole, will help people who have kidney disease better manage their conditions, which can lead to more productive citizens who will live longer, healthier, and happier lives.
I urge Congress to pass this legislation. Lawmakers have a chance to make a real, tangible difference now for countless individuals impacted by the exacting burden of chronic kidney disease.