'I don't know if I would be here' without it: Kidney patients reflect on the impact of Medicaid in their lives

For millions of low-income Americans living with or at risk for kidney disease, Medicaid is a vital lifeline that provides access to health care services and medicines to help them manage their disease, either slowing or halting progression of the damage to their kidneys. Karen Brooks and AKF Ambassadors Cindy Vallette and Sejal Patel know how devastating budget cuts to the Medicaid program would be for people living with kidney disease because they all have relied on Medicaid at some point in their lives to get the health care they need for kidney disease and other medical conditions. 

Cindy lives in Nevada and wound up on Medicaid after being laid off from her job in 2018. "I was making significantly less than what [I had been making while I was working]," she said, so her prior health insurance plan directed her to apply for Medicaid since she qualified for the program under their income eligibility rules.  

Not long after starting her Medicaid coverage, Cindy made a doctor's appointment because she was feeling "off" and thought she might be anemic. She was given a blood test and then asked to come in for a second blood test, which confirmed she had stage 3 kidney disease, along with a condition called hyperparathyroidism.  

Cindy was blindsided by her diagnosis. "I lost my husband just prior to the diagnosis," she said. "It was like this big spiral that just kept happening. [Medicaid made] a whole world of difference for me because it was the one spot where I knew I could still take care of myself." In fact, Medicaid made it possible for Cindy to see a nephrologist in the first place. "Just the fact that I was able to continue with care after the diagnosis, I think, was the biggest impact for me," she said.  

When asked where she thought she would be without Medicaid, Cindy became emotional. "I don't know that I would be here," she said. "Not only am I alive, but I'm not on dialysis, I'm not looking for a kidney and I've been able to be a grandmother." She said she fears cuts to Medicaid will prevent other people from having the same opportunity at living a healthy life, as she has had.  "There are people like me who have to make choices when tragedy strikes or whatever the case may be in someone's life," Cindy said. "There are lots of people like me who are going to have the same circumstances, whether they lose a spouse...it brings them to the point where Medicaid is as alternative for them to continue receiving proper medical care." 

Like Cindy, Sejal went to the doctor in 2009 because she thought she might be anemic. "I felt really dizzy, and I was seeing black spots everywhere. I couldn't really walk very far without having to sit down," she said. Sejal, who lives in Arizona, was diagnosed with Stage 5 end-stage renal disease, also known as renal failure, which was diagnosed through her anemia. Sejal also had type 1 diabetes, so during her kidney transplant evaluation, the transplant team recommended that she receive a dual kidney/pancreas transplant. She was listed at Mayo Clinic, and during the financial review — although she had health insurance through her job at the time — Mayo Clinic recommended that, with her declining health, Sejal go on Medicaid, since she could not afford to pay out of pocket for her health care expenses and post-transplant medications, which cost thousands per month. 

Medicaid made an enormous difference in Sejal's life. "It was amazing because I was obviously allowed to take care of my health, attend my regular follow-up visits for my care with my doctors, and not worry about the high cost of medications because Medicaid covered them," she said. "At the time, I needed Medicaid because I wasn't able to work. It allowed me to recover, get my transplant, and receive post follow-up care and my immunosuppressants to keep my organ healthy." 

Sejal said that if it were not for Medicaid, she wouldn't have been able to pursue her career in medicine that she had worked so hard for. "I'd be in huge debt without Medicaid, and I would not be able to say that I've had my transplant now for 16 years — because without my medications, I'd have rejected my organs most likely," she said. "I don't know if I would be alive today without the help of Medicaid to cover my insulin, immunosuppressants, and doctor visits, to be honest." 

Sejal shared Cindy's sentiments about the importance of protecting Medicaid from cuts. "Medicaid allows people to get back to their lives by staying healthy and to be able to get the best care they can get to manage chronic diseases," she said. "Patients with chronic illnesses like kidney disease are very distinct patients because we require continuous doctor visits, labs and medications to stay healthy. Without the ability to have help to do this, we wouldn't be here to give back and be able to help others. It's very important because it allows people to take care of themselves, so they stay healthy and are able to give back — full circle." 

Karen, a Pennsylvania resident who has polycystic kidney disease (PKD), said her condition has dramatically changed her life. "I can't do what I used to be able to do because it's almost like I'm weighed down...my kidneys keep getting bigger," she said. Although Karen does work part time at Wal-Mart, she does not receive health insurance through that position. Fortunately, she was able to apply for Medicaid coverage in 2018 and was approved shortly thereafter. She said it has made a world of difference.  

"[Thanks to Medicaid], I was able to go to the doctor, and I was able to go to a specialist," Karen said. "[If I didn't have Medicaid], it would be horrible. I really don't know where I would be."  

Congress is currently considering legislation through the budget reconciliation process that would result in significant changes to the Medicaid program — changes that AKF opposes. The House of Representatives passed this bill on May 22, and it will now go to the Senate, which could make changes to the legislation. The nonpartisan Congressional Budget Office (CBO) estimates the House bill's Medicaid cuts — of more than $700 billion, the largest in the program's history — would result in nearly 8 million people losing their health insurance.AKF has been working at the federal level to protect Medicaid on behalf of the kidney community.   

Visit our website for more information on the congressional budget reconciliation legislation and how it could affect Medicaid and contact your senators to urge them to oppose cuts to Medicaid.