Five years ago, Penny Cooper got a kidney transplant.
She now has to take several medications every day, including a drug to suppress her immune system, so her body does not reject the transplanted kidney.
She worked at a hospital full time for decades until her health declined too much to be able to continue. Now she has a part-time job, but sometimes, she still struggles to pay for what she needs. Her medicine costs around $100 a month.
“My rent is almost $1,200 a month … do you eat or do you get your meds? Do you pay your rent? … You got to steal from Peter to pay Paul.”
Sometimes, she’s had to ask her family to help her pay the bills. She credits the team of social workers at Temple University Hospital for making sure she can always get her medicine.
Transplant recipients need expensive immunosuppressive drugs. Medicare will cover them, but until recently, the coverage stopped at three years. Some patients can lose their transplanted kidneys because of it.
Now that has changed with legislation that went into effect this year to stop limiting Medicare coverage of these drugs to three years.
Roy Bloom directs the kidney and pancreas transplant program at the University of Pennsylvania and has worked with transplant patients for more than 20 years.
“Obviously, everyone was very excited and … I think most people in the field considered it a win,” he said.
However, he points out the new change still only pays for the immunosuppressive drugs and does not cover doctor’s visits, lab tests, and other services that a kidney transplant patient also needs to stay healthy and keep the kidney. So kidney transplant recipients cannot fully rely on this coverage and should use it as a stopgap to get better insurance that covers the other services they need.
While the new law is a step forward, it also does not cover any of these drugs or services for transplant recipients who get organs other than kidneys. And sometimes patients go to extreme lengths to save money.
Lorrinda Gray-Davis got a liver transplant in 2018. She got a liver that had hepatitis B, so she takes an expensive drug that prevents her from getting hepatitis B. She’s on Medicare, and while the drug is covered, she would still have to pay $200 a month for it. That was more than she could afford, so she worked with her transplant team to find another drug that would have a similar effect and only cost $30 a month.
“The transplant surgeon and my hepatologist got together and decided, ‘Okay, we’ll do this. We don’t want to do it because it’s going to affect the kidneys.’ But … that was the only choice that I had.”
She now has chronic kidney disease as a result of taking the drug she could afford, instead of the more expensive drug her doctors would have preferred.
She is also president of Transplant Recipients International Organization, which advocates for transplant recipients and their families.
“In regards to the transplant patients and their experience from insurance and drug pricing and being able to get medication, for all organs, I feel like … 80% of transplant patients are dealing with some type of issue like this.”
David Reich, surgical director of the liver transplant program at the Cleveland Clinic in Florida, said he has seen patients struggle financially, and try to stretch their supply of drugs.
“Instead of taking the full dose, they’ll take a reduced dose to try to pinch pennies,” he said. “They’re embarrassed. They don’t necessarily share this with the care team.”
He said he finds out about these cases after the patients have health problems down the road.
It took more than a decade of advocacy to get this new law so that Medicare would extend coverage of immunosuppressive drugs for kidney transplant recipients, said Luke Preczewski, vice president of the transplant program at the Miami Transplant Institute at Jackson Memorial Hospital. He helped push for this new law as part of the American Society of Transplantation.
“I made a number of trips to D.C. and visited with congressional offices. And over the years, I never, not a single time, heard anyone in any congressional office argue against this,” he said.
Despite that, he said getting this new law passed took so long because even though covering the cost of drugs would help transplant recipients keep their organs and save the government money in the long run by preventing bigger health problems, Congress sees extending Medicare coverage as an increased cost.
“Much of what I heard was that there would be a need to identify some other spending reduction elsewhere to ‘pay’ for this, even though in the mind of the transplant professionals, we see it as something that is paid for by the benefit of the patients and as I said, not just clinically but also financially … we believe, saves the government money.”
Two doctors commented in the New England Journal of Medicine in 2012 that Congress’ reluctance to extend coverage is “penny wise, pound foolish.”
Preczewski said that even though it took so long just to get to this point, he is optimistic that there will be more progress that will not take as long to achieve.
“I’ve worked in transplant for a long time. This is a business of hope,” he said. “We give patients hope and we have hope ourselves.”