Jamison resident Michael Riotto traveled to Washington, D.C., on June 14 as part of the Patients Rising Now “We The Patients” Fly-In to advocate for health care legislation for patients with chronic illness.
Riotto, who has lived with myeloma since 2011, spoke with multiple Senate and congressional offices as part of the visit, including a meeting with U.S. Rep. Brian Fitzpatrick of Pennsylvania’s 1st Congressional District, who agreed to be a member of the Congressional Patient Access Caucus, which will launch in 2023.
As a Patients Rising Now Master Advocate, Riotto promoted multiple health care-related bills that dealt with high costs, transparency and accessibility. These bills included the HELP Copays Act, which lowers out-of-pocket costs for patients, and the Protecting Health Care for All Patients Act of 2022, which eliminates the use of discriminatory health metrics federally.
Riotto found the lawmakers receptive to his advocacy and personal connection to the issues, stating, “We always ask them what we can do for them and they tell us to keep telling them our stories because that’s what makes the difference when you’re trying to get a law passed. I got the feeling that they really do care, it’s just a matter of getting it all done.”
Riotto’s connection to these issues is a result of his treatment for myeloma, which requires constant scanning, bloodwork and chemotherapy. These treatments have come with high costs for Riotto, especially during the first five years when he had to get blood work done every six weeks. “The first five years it was anywhere between $12,000-14,000 a year, and this is with really good commercial insurance,” explained Riotto. “Having myeloma is extremely expensive, you’re always on some kind of medicine. It’s crazy to think that some have to choose between their mortgage or keeping food on the table and the meds they need to keep them alive.”
The issue of oral parity first drew Riotto to health care activism; myeloma is treated with a pill, which requires more patient cost-sharing than if treatment were administered intravenously. He started advocating for an oral parity bill on the state level, which was passed in 2016, and is now fighting for the same law to be implemented on the federal level. Riotto volunteered for the International Myeloma Foundation and Leukemia and Lymphoma Society before being invited to attend a master advocacy class with Patients Rising Now, an organization he has been with for the past two years.
Riotto spoke about the motivation for his advocacy work, “I would give up anything for anybody. I’m also a little bit selfish for myself because maybe one of those laws that get passed will help me a little bit, but it’s also going to help thousands if not millions of other people.”
Despite living with myeloma, Riotto emphasized the importance he places on not taking his life for granted. Besides the time he spends volunteering, he works out daily and also spends time cooking and gardening. He credits the support he gets from his family as being instrumental in helping him live with the disease; he has been married for 35 years and has two adult children. “The first five or six years there were no family vacations or extraneous things, we had to give up all kinds of stuff just to take care of me,” said Riotto.
Riotto discussed the challenges that come with living with myeloma while also crediting his family and friends for helping him through them: “The hardest part is mental. Living with a cancer you know is going to kill you every single day is really challenging. The physical aspect is tough but the mental aspect is really challenging. As long as you have great support out there you can face that mental challenge.”