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Volunteer Spotlight: How Judy Advocated for Better Access to Care for Rare Hawaii Residents

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This year, NORD Advocate Judy A. testified before the Hawaii state legislature, leading Hawaii to pass a law making it easier for residents with rare diseases to access out-of-state physicians  

Judy knows that when you live with a rare disease, where you live significantly impacts your ability to access the right doctor and greatly affects your health. She lives in Hawaii and has IgA nephropathy, one of about 7,000-10,000 known rare diseases that, combined, affect more than 30 million Americans. IGA nephropathy affects the kidneys and, like most rare diseases, has no cure.  

“We don’t have a lot of access to specialists for rare diseases, being isolated in Hawaii,” said Judy. “We have to look to the continent for doctors. Some people with rare diseases cannot fly, and when you do fly to see a provider, it’s all out-of-pocket costs.” 

Channeling her experiences as a rare patient and the challenges she has faced on her journey, Judy reached out to NORD and began advocating in Hawaii for the passage of Senate Bill 674, to make Hawaii a member of the Interstate Medical Licensing Compact. On June 22, thanks in part to Judy’s advocacy, Hawaii joined 37 states, the territory of Guam and the District of Columbia, in adopting the Compact. The Interstate Medical Licensure Compact helps streamline the medical licensure process, making it easier for out-of-state providers to become licensed to treat patients in additional states, including via telehealth. 

Interstate Medical Licensure is an important policy priority for NORD and rare disease patients. When you have a rare disease, there may be only one or two specialists or care centers in the entire nation who are knowledgeable about your condition and how to treat it. People living with rare diseases routinely travel great distances for care, with nearly 40% of NORD survey respondents reporting they travel more than 60 miles to meet with their providers. Time spent traveling has contributed to the ripple effects of rare disease on work and family, with 62% of adults unable to attend work, 26% of children unable to attend school, and 76% of respondents experiencing financial challenges as a result of their rare disease or caring for a rare family member. Telehealth often provides a much easier alternative to traveling long distances for medical care, but the United States’ current state-based medical licensure regime significantly limits patients’ access to telehealth with out-of-state providers, as physicians are required to be licensed in the state where a patient is located to see them via telehealth.  

“Because living with a rare disease in Hawaii is extremely isolating, it’s really frustrating when you don’t have the answers and there’s really no one here who knows what’s going on with your disease,” added Judy. “I had to do a lot of my own research and don’t have the money to be traveling and paying out-of-pocket to go see an IGA nephrology specialist. It would have been so helpful to have had a virtual appointment to ask what exactly this disease is and what is the best way for me to manage it. I had to teach myself all of that. To be able to connect with a specialist would be so helpful and would give people the motivation to get on track and manage their illness.” 

Like many volunteers, Judy never imagined getting involved with advocacy but is so glad she did. She started her advocacy journey with the National Kidney Foundation during Kidney Week, then joined NORD for the Rare Disease Day campaign. Earlier this year, she joined NORD’s new Policy & Advocacy Taskforce. Judy’s efforts around SB674 marked the first time she has ever given testimony, and she enjoyed going to the capitol building and speaking with legislators in person. She was the only patient in the room giving testimony and, as long as she is healthy enough, wants to do more of it – next time bringing family and working with NORD to recruit other patients to join the effort. 

“I never really realized how important advocacy is,” Judy told us. “There is so much going on right now in health care in America. A lot of people focus on other things to advocate for, but we need to focus on rare diseases. This new law will help improve our health because it will give us more options.”  

She added, “It is so important to advocate for yourself, not just in hospitals and with doctors, but in politics, too. Being rare disease patients, we need to make sure our rights are being considered and the things we need to live our lives the best way we can are being considered, and that’s not going to happen unless we talk about it. They don’t know there’s a problem unless we tell them. If we’re not speaking up for what we need, they’re not going to know.” 

Next up, Judy is focused on getting a Rare Disease Advisory Council (RDAC) created in Hawaii to help give people living with rare diseases and the doctors who serve them a stronger voice in state health policy.  

Take Action 

Interested in getting more involved with rare disease policy and advocacy in your state? Join NORD’s Policy & Advocacy Taskforce: rarediseases.org/driving-policy/policy-taskforce

Get Assistance 

Hurricane & Natural Disaster Emergency Relief:

Judy is safe regarding the recent devastating fires in Hawaii. NORD aims to assist our rare community members who may have been impacted with our Emergency Relief & Assistance Programs. If you have rare patients or families in need of emergency relief, please encourage them to contact NORD Patient Services. Funding is limited, and requests for assistance are on a first come, first served basis and subject to funding availability.

  • Eligibility: Rare diagnosis (this is not a disease-state specific program, but rather open to all rare, diagnosed individuals).
  • Phone: 877-291-8082
  • Email: [email protected]
  • Online application available here.

IgA Nephropathy Assistance:

Are you a patient like Judy living with IgA Nephropathy, and do you need financial assistance with out-of-pocket healthcare costs related to this disease? Apply for NORD’s IgA Nephropathy Patient Assistance Program here: https://bit.ly/3Owo8tr

For more information about this Patient Assistance Program, contact NORD at [email protected] or call 203-309-3276.