Lori Hartwell

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 

 (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 

, 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 

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.

Articles

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.

Contributor: It’s Time for Medicare to Cover Oral Alternative Therapies for Iron Deficiency Anemia

Patient choice has always been the cornerstone of my beliefs. In 2016, Congress decided that people who are eligible for Medicare due to a diagnosis of End Stage Renal Disease (ESRD) would become eligible to enroll in 

 (MA) plans beginning January 1, 2021. MA is an option under Medicare to receive coverage through a private company that contracts with Medicare to provide plans offering Part A and Part B benefits. Most MA plans also offer prescription drug coverage under Part D, and they can offer services not covered by Medicare, plus improved care coordination.

When MA plans were first signed into law in 1997 (first called “Medicare+Choice” and renamed “Medicare Advantage” in 2003), Congress decided it was best to prevent people on Medicare due to ESRD from enrolling in these plans, due to concerns that inadequate networks could lead to serious health issues, or even death, for this population. For example, if a person with ESRD needed a vascular access repair to receive dialysis but no doctor in the network was available, the person would have to get very sick and be admitted to a hospital to have a chance at lifesaving treatment.

MA plans don’t require secondary payers; therefore, these plans can offer additional benefits (such as access to a dentist) at reduced costs. Enrollees are often required to pay a co-pay for the service. Insurance companies contract with providers and negotiate fees. The downside is that people enrolled in MA plans are in a network of providers that may require authorization to see a specialist or get a test. Before signing up for a managed care plan, it is recommended that the beneficiary ensure that the doctors they need to see, and the medications they are currently taking, will be offered in the plan.

Much to my dismay, and to many kidney care advocates, the policy that was intended to help—opening up ESRD enrollees to MA plans on a broader basis—can actually be harmful.

Specifically, CMS has decided to eliminate a longstanding policy that required MA plans to include a minimum number of dialysis facilities and establish time/distance standards (known as network adequacy standards) that are designed to give people access to life-sustaining dialysis treatments. The network adequacy safeguard was put in place to protect patients from joining plans that would restrict their access to adequate care for a serious illness. With no network adequacy, nor the ability to see beforehand which facilities participate in the MA plan, I don’t know how someone who needs access to dialysis could make a choice without potentially dire consequences. It will equally be important for plans to be transparent and list transplant centers, as well. A patient can be listed and ready to receive the gift of life and then enroll in a managed care program and learn their transplant center isn’t an option. This would require the person to go through the entire screening process again.

Most people with kidney disease need dialysis 3 times a week, and in the MA plan they may have to drive across town for treatment, or further, even if one is closer to their home. People in rural areas will have even more issues with distance. Even those who do home dialysis require in-center treatments from time to time, and they rely on either public transportation, healthcare transport companies or friends or family members for help.

This new policy does not expand patient choice; it hinders it and puts a blindfold on it.

Not knowing if you will be able to continue your care with the same trusted doctors and clinicians you have counted on for years seems cruel. Other Medicare beneficiaries are not being asked to make such choices.

Congress has mandated expansion of a choice to enroll in MA plans to everyone with ESRD. Continuity of care is central to the long-term treatment of someone with a chronic illness that requires serious maintenance. Unfortunately, the intent of Congress to expand choices to those with kidney failure is being foiled by this unfortunate regulatory blunder that needs to be rectified immediately.

Patients who are drawn to the additional offerings that an MA plan might afford them will see what and where they can get care only after they sign on the dotted line. What will they do if, after they enroll in an MA plan, they find no in-center facilities in their network, or that the only facilities available to them are too far away to be practical? After all, they may need treatments 3 times a week!

In this scenario, I believe people who require life-saving dialysis will fall through the cracks. They will either have the unnecessary burden of becoming entangled in red tape trying to undo their MA plan enrollment—or worse—they will give up because of the burden.

This new regulatory approach needs to be reconsidered so that people who need dialysis know upfront whether an MA plan will allow them to continue to see their own doctors and receive treatments at their preferred facilities. People dialyze to live. They should not have to travel great distances or get caught up in the fear of not having access to lifesaving care because an MA plan did not provide them the choice.

A pioneer in kidney care, Lori Hartwell is founder and president of the 

. After requiring dialysis at age 2 in 1968, she is now doing well with her 4th kidney transplant, having spent thirteen years on dialysis. Hartwell works to help her peers navigate care and remain hopeful. She lives in Glendale, California.



A rule change to let those with end-stage renal disease enroll in Medicare Advantage has a twist that could stop patients from learning if their dialysis center iis in the network.

Lori Hartwell

Articles

Contributor: It’s Time for Medicare to Cover Oral Alternative Therapies for Iron Deficiency Anemia

Contributor: Under New Rule, MA Plans Can Keep a Blindfold on Dialysis Facility Choice for Individuals With Kidney Failure