Her name is Jennifer Payne and if you haven’t already read about her on Patient Worthy, she’s something of a rare disease revolutionary.
Her advocacy work on phenylketonuria (PKU) has been instrumental in helping patients who are at risk of losing coverage or unable to get the medical foods they need. She hails from a background in pharmacy, policy, science, and suffers from PKU herself. While her disease presents challenges, she’s accomplished a lot. To learn more about PKU, click here.
Now, Jennifer is using her poetry and songwriting skills as a creative outlet to raise awareness about PKU.
Her latest song, “Claim’s No Good,” which is told in the voice of a PKU woman, is a direct response to the National Academy of Medicine’s call to action on manufacturing a society of health equity. Treatment of PKU requires a very specific diet, with specialized medical food. This can been a challenge to acquire, because not all insurance companies cover the expensive food.
But times are changing and and we’re seeing some much needed progress going on with the Medical Nutrition Equity Act, and because of the people who are working hard toward making medical foods more readily available.
This is a personal issue for Jennifer, because it was these very medical foods that saved her life and her children’s lives. However, they are being denied by her job, who happens to be the United States government, along with her spouse’s job.
Jennifer’s song is filled with empowerment in part of the PKU female, who feels like she’s been left out of necessary legislation. It’s also a reality check and wake up call for policy makers to stand up and help the rare minority of unsung heroes that suffer from PKU.
You can listen to “Claim’s No Good” performed beautifully by Kipyn Martin, by clicking here.
Another one of her songs takes on a Bon Jovi “It’s My Life” vibe while voicing the thoughts of a PKU sufferer. It’s called “Medical Foods Highway” and you can give it a listen here.
Jennifer has also released a poem called “Ode to Medical Food,” also inspired by the same subject matter, in which you can read here.
“Today, as with the inception of medical foods in the early 1970s, the call for national legislation to remind insurers of their obligation to help reimburse patients for this specialty, orphaned and costly nutritional therapy is still unanswered,” said Jennifer in an interview with Visualize Health Equity.
Jennifer will continue to do what she do best and go beyond politics and into the world of creative expression to keep making noise in a poetic way.
