What AKF Ambassadors are hoping from the Biden administration and 117th Congress
Last month, President Biden and the 117th Congress were sworn into office. With one political party in control of the White House and Congress, there will be opportunities for new legislation and ideas to emerge that otherwise may have gotten stuck in political gridlock.
As a nonpartisan organization, AKF works with elected officials on both sides of the aisle to introduce, support and promote legislation that would improve the lives of those living with kidney disease, their caregivers and living organ donors. We spoke with a few American Kidney Fund (AKF) Ambassadors about what they hope to see this term from the Biden administration and Congress.
“I believe that we need to target more of the Hispanic community,” said David Rodriguez of San Antonio. “We have people going across the border to Mexico to get their medicines because they can’t afford them here.” Not only do people cross into Mexico for their medicines, David says they also do so in search of affordable treatments. “My 82-year-old mother lives in the U.S. but goes to the dentist in Mexico,” David added. “There are a lot of people who have significant dental work that needs to be done. If your teeth are not right, you can get kicked off the transplant waiting list .” Dental infections could pose a great risk to people who are immunocompromised due to the medicines they take post-transplant.
David says that significant dental work is not an affordable option for many people. He thinks providing more government assistance to those who can’t afford their medicines or necessary treatments could make health care more equitable. While understanding that it may not be a priority for the Biden administration, David, a transplant recipient, wants to see a new food stamps level for people with chronic illnesses. He used to be on food stamps and knows how hard it can be to afford the kidney-friendly foods and fluids recommended by his doctor and dietitian to manage his kidney disease, even with assistance. Many lower-income communities are food deserts—areas around the country in which it is difficult to find or afford fresh, healthy foods—so David added that there should be additional solutions, such as mobile farmers. He says that if people can’t get fresh fruits and vegetables easily, it won’t matter how much they receive in food stamps.
Like David, Leigh-Ann Williams of Marrero, Louisiana also wants the government to tackle food deserts in a sustainable way. She was recently thinking of moving to a nearby part of New Orleans but couldn’t make the move because of the lack of healthy, kidney-friendly foods there. “In the 9th Ward, a lot of people don’t have vehicles or reliable transportation,” she said. “But it almost doesn’t matter because there’s nowhere to get fresh fruits of vegetables. You couldn’t even walk to get those foods if you wanted to.”
Leigh-Ann has one other legislative priority for this year: passing the federal Living Donor Protection Act. Leigh-Ann currently dialyzes at home and wants to get a transplant one day, hopefully from a living donor. “I don’t want them to feel like they’ll lose their job or insurance because they unselfishly gave their organ to me. I want people who want to give an organ to be able to do so without losing their jobs or seeing their insurance canceled or go up because of that,” she said.
Amy Walker from Clinton Township, Michigan also prioritizes the Living Donor Protection Act. She is thankful that she had no problems donating a kidney to her father but is in disbelief at the lack of protections for living donors. “There are a lot of people who don’t even know that many protections are not in place for people who choose to give the gift of life,” she said. “I’ve spoken to one person who told me, ‘I didn’t even know that your employer doesn’t have to support you.’ You also might not get life insurance if you are a living donor.”
Amy strongly believes there needs to be more education about living donor protection issues. She is aware that some states have passed their own protections, but thinks it is past time for a national standard. When she donated her kidney, she was luckily able to take off as much time as she needed. She fears that would-be living donors won’t donate an organ out of fear of losing their job or not being able to afford to take time off from work if they do not get paid leave.
AKF has been actively involved in supporting and calling for the passage of the federal Living Donor Protection Act for years. This vital piece of legislation would provide a baseline of protections for living organ donors across the country. As of right now, there is a patchwork of protections for living donors in the states, meaning that where you live can affect your ability to receive an organ from a living donor or to become a living donor yourself. To learn more about the living donor protections in each state, view our State of the States: Living Donor Protection Report Card.