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by Lisa Van Allen, Chair of RSDSA’s Advocacy Committee

I wish I could put into words exactly how and why Rare Disease Week was so empowering and transformative. Maybe it had something to do with my excitement over the freedom I felt, traveling on my own for the first time in years due to improved health. Maybe it was being in the US Capitol and having access to people in power during such an important time in history. Maybe it was the camaraderie and kinship I felt in meeting so many people living with the challenges that come with a rare disease.

The EveryLife Foundation did an amazing job in putting this important event together. They helped us find common ground in the isolation we often feel, the struggles we have in getting an accurate diagnosis, and the yearning we all have for an effective treatment and cure. They put a lot of thought into the comfort and needs of people in pain and/or with mobility challenges. The lanyards were colored red, yellow or green, indicating your preference for social distancing. The food was labeled with potential allergens or if it was gluten or nut free. There were plenty of breaks, as sitting still is hard even for the able-bodied. And people were incredibly kind and willing to help in any way needed. I go into all this because I don’t want anything to stop YOU from going with me next year! 

Congressional Briefing

The meat of the conference was on Tuesday, which was packed with briefings from legislative advocates and healthcare lobbyists. We were given a deep dive on key policies selected specifically for their impact on rare diseases. This training was to prepare us for our meetings with legislators scheduled for Wednesday. 

Ask #1: Ensuring Steady and Robust Federal Biomedical Research Funding & Public Health Agency 

The current political climate has increased tensions with staffing cuts and potential budget cuts on the horizon. Dr. Amy Bower (a medical researcher and rare mom from Creighton University) made a strong case on how decreased funding impacts not just individual lives, but entire communities, states, and the nation. The three key federal agencies that support the rare disease community are the NIH (NCATS, the National Center for Advancing Translational Services, is considered the home for rare disease research at NIH), the FDA (which partners with rare disease researchers and device developers to ensure safe, effective treatments), and the CDC (which provides information on disease and protects from threats). 

Ask #2: Reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) Program at the FDA

The FDA approves new treatments for rare pediatric diseases and assigns a Prioritized Review Voucher to the company conducting the research. In spite of bipartisan support, the program expired in December 2024. After September 30, 2026, the FDA will no longer be able to award PRVs. 

The Give Kids a Chance Act of 2025 (HR 1262) includes a reauthorization of the PRV program. The Senate is expected to introduce companion legislation soon.

Ask #3: Include Accelerating Kids’ Access to Care Act (AKACA) in the First Legislative Package 

Many children do not have access to specialized care for their rare diseases in their home states. Bureaucratic rules currently require children accessing care through Medicaid or Children’s Health Insurance Plans to treatment in their home state.

On September 17, 2024, the House unanimously passed the Kids’ Access to Care Act, but unfortunately, healthcare policies were dropped from the end-of-year budget package and AKACA did not pass. 

Ask #4: Ask Your Members of Congress to join the Rare Disease Caucus

The Rare Disease Caucus is a bipartisan, bicameral caucus that raises awareness of rare diseases. To see whether your congressional representatives are part of the Rare Disease Caucus, click here.

Ask #5: Support for HB 6094, the “PROTECT Rare Act” (Providing Realistic Opportunity to Equal and Comparable Treatments for Rare) 

You have seen me talk about this bill in previous blog posts and on social media. This ask has the potential of improving the lives of people with rare diseases (like CRPS/RSD) by ensuring access and insurance coverage for ‘off-label’ medications (like IV Ketamine for Chronic pain, as the FDA has not yet approved it’s use for chronic pain). There is a precedent for this access, as cancer patients were given access to off-label medications and treatments in the 1980’s and people’s lives were improved and saved. The Rare Disease Community is asking for parity in access to these potentially life-changing medications.

The conference day ended with opportunities for individuals new to advocacy to meet with other advocates from their state and to work on their “ask”. The group from Iowa (where I live) was small, with only four of us attending. This was actually a good thing, as it gave opportunity for each of us to briefly tell our story and make a specific “ask”. 

Congressional Meetings

The group from Iowa met outside Senator Grassley’s office at 9 AM and were pleased to discover the Senator was attending the meeting with his healthcare staff Nic Pottebaum. This is a special honor as Sen. Grassley is a man with heavy influence and is President Pro Tempore, making him 3rd in the line of Presidential succession. I’ve known Senator Grassley from my past work in Community Health Improvement Planning for Eastern Iowa. He also knows my husband as a fellow UNI grad and Panther football and basketball supporter. But I have not ever shared my CRPS story with the Senator, and I appreciated his listening with empathy and interest in my ask – that he support HB 6094, the Protect Rare Act. I shared a bit about how IV ketamine has improved my life, even making my trip possible. I shared that there is only ONE outpatient infusion center offering ketamine for chronic pain in the entire state and that I drive 4 hrs. out of state for my infusions. Senator Grassley and Nic agreed to research this bill and that the access to care it promises is needed for people living with rare diseases.

We had a little extra time after our stories and asks were made, and the Senator asked if we had any other questions. I asked about his assessment on cuts anticipated from Medicare/Medicaid, as well as from the FDA and NIH and the potential impact it would have on the rare disease community. He spoke briefly about the current turbulence in Washington, and how things are changing at a pace that hasn’t been seen before. But, he gave a brief civics lesson on how changes to policy and to the budget requires that the Senate and the House come to some agreement. The House and Senate are currently very divided on where budgets ought to be made, and so this process will be slowed until consensus is found. I shared that I found this reassuring in that this gives us time to appeal to our representatives in Congress and to remind them of what we want – consistent funding for rare disease research and access to care. The Senator agreed that he works for Iowans… as every legislator works for their constituents, and needs reminded of this. 

The rest of our meetings were with legislative staffers for Representatives Miller-Meeks (who already supports HB 6094), Feenstra and Hinson and Senator Ernst. We each told our stories and made our asks, and I felt each staffer listened and cared about our concerns. Everyone we talked to was very supportive of the pediatric asks, and understood our concerns about funding for research. I got commitments from each staffer that they would share the literature I left on CRPS and on HB 6094 with their legislator. I made particular mention of the frequent contact I have had with veterans with CRPS to Sarah Melone, Senator Ernst’s healthcare policy assistant, as the senator is very active in veteran’s affairs. She was moved by the story I shared about one man who called me, and how his life has been transformed since getting help because of information he found here on the RSDSA blog. 

Rare Artist Reception

Every year the EveryLife Foundation selects several ‘Rare Artists’ who have submitted written (poetry) or visual art. The Rare Artists are honored at a reception and are invited to participate in additional training to be able to speak out and share their stories at congressional meetings. You can see the 2024 artists works and hear a bit of their stories here.

I spent a little time during a break with two of the artists, Dana Simmons and Eugenia Hsu. (I learned Eugenia and I both worked with the Disability Rights Education Defense Fund – DREDF in past lives, and attended the same grad school at about the same time. Small world!). Both women talked about the challenges of diagnosis, the isolation of being misunderstood, and the power art has given them to express their emotions. As an artist myself, I was impressed with the power to raise awareness with our work and help others understand a little more about what we face every day. I KNOW I’m not the only artist who uses painting or drawing or sculpture or poetry to deal and distract from my pain. We need to have someone with CRPS/RSD represented next year! I plan on submitting a piece – who else will take on this challenge?

NIH Scientific Presentations

Originally, my plan was to be in DC for the entire week, but I learned a couple weeks before leaving that the Thursday and Friday sessions at the NIH had been cancelled. Honestly a part of me was thankful my trip was shortened – I was nearing my pain tolerance limit by Wednesday night. Even so, I was looking forward to being at the NIH as I’ve been told their presentations last year were the highlight of the conference. NIH staffing cuts caused the cancellation of the scientific presentations. It is a strange feeling when national news items hit you personally. DOGE staffing cuts and impending budget cuts were on everyone’s minds and part of nearly every conversation. This is not a political issue – it is a healthcare issue. Regardless of where you land on the political spectrum, your voice is needed. We each need to contact our representatives are ask them to protect funding for research and access to care for rare diseases. 

Here’s Your Call to Action:

1. Write your legislators about your concerns about the coming budget cuts. I encourage you to focus on:

• Ask #1: Ensuring Steady and Robust Federal Biomedical Research Funding & Public Health Agency Support, and

• Ask #5: Support for HB 6094, the “PROTECT Rare Act” (Providing Realistic Opportunity to Equal and Comparable Treatments for Rare) 

You can find your legislator’s contact information here under the “Contact Your Member” section.

2. Put Rare Disease Week 2026 on your calendar. It’s the last week of February – and you don’t want to miss it!

3. Consider entering a piece of your work if you are an artist in the Rare Artist contest. 

Let me know when you’ve done these things! And don’t hesitate to ask any questions – if I don’t have the answer I will find someone who does!

Even RSDSA will be using patient data to identify potential CRPS patients. Moreover, your patient data, called Personal Health Information, or PHI, and Personally Identifiable Information, or PII, is analyzed by your insurer, accountable care organizations, integrated care organizations and many others outside of your physician’s office.

By James Doulgeris, Chairman, RSDSA Advisory Committee

You probably have heard of HIPAA (The Health Insurance Portability and Accountability Act of 1996) and believe that your personal health data is between you and your doctor. It is, and it is not because many people have access to it in many ways.

But why doesn’t HIPAA protect your health information? Because you have approved its use for specific purposes. Remember all those insurance and physician office forms you signed? They include approval as a condition of your care or insurance, and for good reason. Health data analytics and population health management play an essential role in providing efficient and effective healthcare for us all. Without them, epidemics like COVID would have been far more deadly and treatments and cures for many diseases would not be available.

Your information is safe. Every person having access to PHI and PII must be certified and pass a federally administered exam each year to keep that certification. There are strict rules in place to keep your, and everyone’s data secure.

How would I know? I held such a certification for years and was responsible for both PHI and PII for over 275,000 patients. Our site was secure. Our systems were protected by the latest anti-viral and anti-hacking software. Data never left the building. Everyone who had access was fully trained, background checked and certified. It was a strict requirement to receive the data and we were audited regularly as is any organization with access to such information.

With the RSDSA CRPS project, we will not have access to any patient information unless the patient gives express approval to allow us to have it, and that will be to assist them after they have been diagnosed and need our assistance.

To learn more about big data in healthcare, the National Institutes of Health has published an excellent briefing.

Educational articles and updates are provided as a service of your RSDSA Advocacy Committee 

Interested in volunteering as a member of the Advocacy Committee? Its as simple as emailing us at [email protected] to learn more. Or you can support us with a monthly gift. Just click here.

RSDSA receives no governmental support. We are totally reliant on donations from the CRPS community and from our fundraising events. Thank you for your kind consideration.

Written by the Hon. Jenn Coffey for the RSDSA blog.

An activist’s dream. That’s how I would describe the trip back to Washington D.C. for the “People’s Action Organizing Revival: a call to revitalize the movement for social justice by strengthening skills of community organizing at every level, and in every organization.” 

I arrived to find about a thousand people attending this conference, all of whom I was about to speak in front of. I felt like a schoolgirl with my knees knocking with stage fright. These folks represented the leadership of organizations from across the country. I lost count of how many states were represented. I’ve worked with activists my entire life but had never done anything on the scale of what I was about to experience.

I held back tears as person after person thanked me for sharing my story. These people shared the videos from the town hall, and the ones of me telling the story. People asked me questions about CRPS (Complex Regional Pain Syndrome). It was overwhelming to feel so seen, yet that was only the start of events that I didn’t even realize belonged on my bucket list.

The event had a large opening, complete with a marching band, energizing the over one thousand attendees and staff. There was incredible energy in the room, and I realized while sitting on the stage, who these people are. They are the doers, the ones who protest, write letters, or even make appointments to meet with the elected, and have their voices heard.

When it came to my turn to speak, I felt a surge of energy from the force of the applause in the room. These people are energized and able to do the legwork that I can only dream of. These are the people who signed the petition and shared the videos. The doers are in fact OUR team. Each of these people uses grassroots activism and organized the people in their states to fight the battles that everyday people face. They listened intently to me speak of our plight. How we struggle for diagnosis and treatment. The devastation is caused by private for-profit medical insurance companies, denying more than they approve, especially for those with rare illnesses like CRPS or Small Fiber Neuropathy.

The roar of the crowd was overwhelming, and I took a moment to just breathe. In this journey, I have seen that it is really important to be present and take in moments like this.

The next day was all about learning and connecting. People broke into different sessions focusing on various tools. Some concentrate on techniques, like how to deep canvas and have discussions on hard conversations. Politics in the last few years has become more volatile, making it even more intimidating to speak to the elected about the forever sick. For my part, we focused on having conversations with people who don’t agree with you. I didn’t realize how much of that skill comes from the lives we live as warriors with CRPS.

We have all experienced it, dealing with people who have no idea we exist, or the blocks we face in accessing healthcare. I’ve found myself defending my treatments to the well-meaning pseudo-expert trying to tell me how to “cure” CRPS. The more we speak up and become real to the world, the more possibilities there are. That unfortunately means lobbying the elected in order to protect our community and fight for access to life-changing treatments, typically blocked by nothing more than a lack of money. My goal at this moment is to get Congress to hold hearings on how these companies, especially with Medicare Advantage plans, leave patients without treatments, without comfort measures, and without dignity. We need to change the system these companies operate in and use against people with CRPS to deny treatment. This convention was teaching the tools to do just that.

The final day was organized chaos in the very best of ways. First, we loaded 20 buses, with bus drivers who had no idea where they were going to drive to. All they knew was that over 900 of my closest friends were going to flash mob protests in specific locations around the DC area. When we acted on healthcare, we protested outside of the offices of the very lobbyists who diminish our medical care. They lobby for less responsibility for health insurance companies, giving their corporate stockholders billions in profit. We wanted to put them on notice. We are no longer going to stand by while people suffer and die without care readily available at most hospitals, but inaccessible because they can’t afford to buy in.

I’ve been able to share our stories of losing our homes and struggling to afford care and food. So many of us have become medically poor in large part due to so-called “medical” insurance companies, which would rather we die off than pay for us. We are so very “expensive” to keep alive. 

Being on the streets of Washington DC surrounded by people chanting and demanding medical care for all. For an end to massive denials while we suffer unable to navigate the appeals process. It’s a chance to turn the tables and force elected officials to see us. We have to push for hearings to address private health insurance greed. These people made sure we were seen.

The next part was a whirlwind of epic efforts. We lobbied in private meetings with the Senate finance committee staff for hearings on denials. We told them that we needed them to investigate. We told them about computers using keywords to issue denials. We moved on to Senator Markey (D-MA), Chair of the Senate Health, Education, Labor, and Pensions (HELP) Subcommittee on Primary Health and Retirement Security. Sharing the same things with him, hoping he will investigate how these companies seem to default on Denial of Care. Far too often we have to battle these companies in order to stay alive. We met with a staff member whose job it is to work on these very issues for the entire HELP committee. 

If we can get them to hold hearings, we can be heard on a large stage. We can show people the reality of our lives, and our constant battles with insurance companies to access the medical care we need. 

Often I have received, in writing and on the phone, an apology from the insurance representatives. They say, “We are sorry for your inconvenience.” That’s how out of touch and ignorant they are of the medical treatments that they have the power to say yes or no to. More than once I have told them to stop saying that. This is not “an inconvenience,” I tell them. This is my LIFE!

If it wasn’t for the buses, Lyfts, and people willing to rent a wheelchair to push me around, I couldn’t have done any of this. It was a good exercise on finding my limits. I’ll admit, this one got to me, and when I got home it turned into a two-week recovery. It was so very worth it. Nothing will change if we cannot be seen by the decision-makers.

Next up, I will go back to DC to meet with some New York City retired first responders who are having to fight to keep their Medicare. Some are 9/11 first responders who have rare illnesses and sicknesses caused by that horrific day. I have little doubt that there are CRPS patients.

They should be home enjoying their well-earned retirements, yet here they are. We will be meeting up in a church where they will get some key points to help them lobby their senators and representatives. Their mission is to preserve and protect the traditional Medicare plans they have. The city mayor and others are attempting to force them off of those medical plans and onto, you guessed it, private for-profit medicare advantage plans. Many would lose their providers and hospitals, being forced to move to “in-network” providers. Trying to use the backs of the sick and most vulnerable to make cuts on medical costs. We with CRPS know this too well. I’ll be sharing my story and helping them to have more ammunition for their fights.

There will be a press conference where I will have a chance to again share our existence with the world. I will also lobby more senators and representatives. Do you know who is representing you? If you visit congress.gov/members/find-your-member you can find out, and even send them an e-mail message. Every time you contact them, they see a voter and it puts our issues back in front of them. The more of us that ask for these hearings and share our stories of denials and roadblocks to care. There are grassroots organizations in many states that would love nothing more than to help you have your voice heard.

Everyone deserves access to the best American medicine can provide. Stay tuned for the report on this next effort in Washington D.C.