Preparing to Talk With Legislators With a One-Pager

Written by Lisa Van Allen, Chair of the RSDSA Advocacy Committee, for the RSDSA blog.

Communicating directly with your legislator is the best way to promote change in the laws and policies affecting healthcare in the United States. When you meet with a legislator or staff member, preparation is important to assure your message is clearly and succinctly communicated. A “one-pager” is the best way to do this.

A “one pager” helps effectively deliver your message and facilitates a productive conversation on the issues of importance to you and your organization.

Meeting with a legislator or staff person in your local office or in the Capitol is a great way to share your CRPS story, information about your disease and/or organization, and problems that you and/or your organization face. We recommend creating a one pager to use as a tool during a meeting and to leave behind with the legislator or staffer at the end of the meeting.

A one pager is a brief fact sheet and should be one single page. When creating a one pager, present the information clearly and use concise bullet points.

Your one pager should include:

  • A brief statement on the organization you represent and what the organization does.
  • A brief summary of the problem that you are seeking help on. Use data and reference studies (when applicable) to support your position on the issue.
  • A brief summary of the solution to the problem, such as legislation, and what it will do for you and/or the pain community.
  • What your legislator can do to help, also known as the “Ask.” Example: Support the Protect Rare Act, HB 6094
  • Include a list of supporters such as a group of other organizations that support your position or piece of legislation, the co-sponsors of the legislation, and/or the other signers of the letter.
  • Include your contact information so that the legislator and staff person can contact you if they have any questions.

Creating your one-pager before your meeting with legislators is an excellent way to prepare and to create strong brief messages that will have an impact. 

Below you will see a sample one-pager on the PROTECT Rare Act. Do you have a one-pager that worked well in a meeting with a legislator? We’d love to hear about it! Contact the Advocacy committee at [email protected].

Cultivating Relationships with Your Representatives

Written by Lisa Van Allen, Chair of the RSDSA Advocacy Committee, for the RSDSA blog.

Building relationships with your Members of Congress is important to ensuring that CRPS patients are heard on Capitol Hill and policymakers are working to improve the lives of patients living with pain.

Members of Congress are more responsive to their constituents and more likely to support a policy proposal when they hear directly from people who live in their district. You can find contact information for your House Representatives and Senators here.

To build a relationship with your Member of Congress, you can:

  • Schedule a meeting with your Member in your local District office or on Capitol Hill
  • Get to know the key staff who handle health care policy in the district and in Washington, DC
  • Invite your Member of Congress or their staff to special events held in your community
  • Attend events like town halls that your Member of Congress holds in the district and state
  • Volunteer for a candidate’s campaign activities
  • Engage with legislators on social media
  • Write letters or emails to your legislators
  • Write op-eds for your local newspapers
  • Send “thank you” messages (call, email, letter, social media) when your legislators support rare disease issues

When should I engage with my Representative and Senators?

Anytime and all the time! Start out slowly, with one or two different activities. As issues arise, engage with your legislators on those issues. Pay attention to the issues you care about most.

As a bill progresses through Congress (committee, House vote, Senate vote, conference committee, etc.), let your legislators know about your position on the issue. Don’t wait until it’s too late to voice your support or concerns on legislation you care about.

How do I connect with my legislator?

  • Find personal connections you have in common! As a constituent, you are from the same state and area as your legislator. You may even live in the same neighborhood, go to the same school, etc.
  • There may be local products, places or activities your legislator loves – when appropriate, reference them in your correspondence (I.e., Sen. Grassley is passionate about cancer prevention, and Rep. Ashley Hinson has two young sons involved in sports).
  • Research the issues that are important to your legislator (check out their website, newsletter, and press releases).
  • Research legislation that the legislator has supported previously (check out their website and press releases).

TIP – Staff are an amazing resource and Members of Congress rely on them to advise them on issues that affect their district and constituents

This information was adapted from the Everylife Foundation.

Advocacy Update | House Bill 6094 Protect Rare

PROTECT Rare Act – Providing Realistic Opportunity To Equal and Comparable Treatment for Rare Act

Over 7,000 rare diseases affect more than 30 million people in the United States. CRPS is considered a rare disease as less than 200,000 people in the US are affected. There is a lack of clinical research for the diagnosis and treatment of rare diseases because there are too few patients for drug companies be willing or able to sponsor clinical trials. Rare disease patients are all too often left fighting for off-label access to a treatment. This creates an even larger problem for patients relying on Medicare, as Part D plans are prohibited from including off-label uses of medications in the formulary. For these patients, there is not even an appeal or reconsideration mechanism available to appeal.

The PROTECT Rare Act (HB 6094) is designed to ensure parity in coverage for Medicare and Medicaid beneficiaries with rare diseases by including peer-reviewed literature and clinical guidelines and outcomes as “medically accepted use”. There is precedent for using medications “off-book” as certain medications were deemed “medically acceptable” for cancer treatment in the 1970’s. For many people with rare disease, off-label use of certain medications are the only treatment available.

This bill is supported by more than 60 rare disease organizations, including the RSDSA.

We encourage you to contact your federal representatives and Senators and ask them to support the PROTECT Rare Act.

The Veterans Health Administration Covers Ketamine

Written by Lisa Van Allen, Chair of the RSDSA Advocacy Committee, for the RSDSA blog.

Ketamine infusions have been proven effective in the treatment of depression, post-traumatic stress disorder, and chronic pain (including intractable pain like CRPS). The Veterans Health Administration has been covering the cost of ketamine infusions AND travel expenses to and from infusion centers for veterans for some time. Here are a few tips to ensure your treatments are covered if you qualify for veteran’s benefits.

The VHA will be looking for answers to:

  • Why you need ketamine infusions
  • Why you want to use this particular provider
  • What the provider will do to ensure a safe and successful experience with ketamine.

First, you will want to have a letter from your medical provider describing your disability rating. This should include what types of treatments have been used in your care and the limited success they have offered. It is not essential to have this provider’s support for ketamine infusions, but it would certainly help. 

Make a case for the use of the outpatient clinic you wish to use by documenting the lack of availability of ketamine infusion in the inpatient facilities in your area, if this is the case. You will want to get a description of the protocol used by the anesthesiologist at the outpatient ketamine clinic. Share the provider’s credentials and his/her experience using ketamine to successfully to treat your condition. Include what medications are utilized in the infusion, the length of time of the infusion, and what safeguards are used to protect you and ensure your comfort (monitoring equipment, staff ratio to patient, etc.). 

If you are seeking travel expenses, you will need to document the number of miles from your home to the infusion center. Some infusion centers require you have a companion sit with you during the infusion. It is unlikely the VHA will cover expenses for your companion – but it never hurts to ask!

There is an excellent article from the VHA that you might want to reference in your request on the efficacy of ketamine infusion for treatment resistant depression associated with PTSD.

10 Tips For Patient Advocacy

Written by Lisa Van Allen, Chair of the RSDSA Advocacy Committee, for the RSDSA blog.

Advocating for Yourself
When I think of advocacy, my mind generally goes to things like letter writing campaigns and meetings with legislators. After all, advocacy is defined as “pleading on someone’s or some cause’s behalf”. Before advocacy can truly be effective we need to learn to advocate effectively for ourselves. 

Self-advocacy is the ability to communicate what your needs are.*It’s being able to describe your condition concisely while knowing you owe no one an explanation.*It’s partnering with medical providers in finding the best course of treatment for your specific needs. *It’s being informed and confident when dealing with bureaucracies like insurance companies and health care systems. *It’s having healthy boundaries with family and friends, so you can say no without guilt, please without shame, and thank you with true gratitude. 

Over the next few weeks I’ll be writing on each of these subjects with the goal of empowering all of us to better advocate for ourselves. RSD/CRPS is painful enough without the stress and heartache caused by unmet needs. 

10 Tips to Patient Advocacy
What is self-advocacy? When living with chronic pain, long-term illness, or a disability, it is often necessary for individuals to advocate for themselves in order to receive the care and resources they need. This may include advocating for themselves with physicians, employers, hospitals, pharmacies, or other groups, such as disability resource offices. Successful self-advocacy ensures needs are identified, personal goals are set, and concerns are shared. Additionally, it can build confidence, ensure informed health care decisions are made, and secure control of ongoing self-care.

What is patient advocacy? Patient advocacy is defined as protecting the interest of a patient through various means, including defending their rights, protecting against inadequate health care, providing support (e.g., financial, legal, emotional, etc.), and contributing to health care decision-making. A patient advocate may also provide caretaking, assist in the navigation of the health care system, and promote patient protection. There may be times when self-advocacy is not enough and finding support from a patient advocate is necessary. Hospitals frequently have patient advocates on staff, and you can also find freelance patient advocates who will support someone faced with a complex medical or legal bureaucracy. However, a patient advocate could also simply be a friend or family member who has been informed of the needs and challenges faced by a patient and has stepped up to support them in getting their needs met.

Becoming your own health care advocate Self-advocating can be intimidating; however, there are several ways to ensure it is a simple and successful task. These include, but are not limited to, the following:

1. Know your rights. Individuals with chronic conditions or disabilities have equal rights that are protected by law. Understanding these rights is essential for successful self-advocacy. Individuals can research these rights themselves or with the help of a lawyer or professional patient advocate.

2. Keep detailed records. Documentation, such as diagnoses, medications, treatments, test results, specific accommodation documents, and medical letters, should be readily available. Keeping these records organized and easily accessible is vital. Many health care systems and medical offices offer online portals or apps where individuals can view their appointments, prescription refill requests, vital signs, test results, and other important information. It is also helpful to obtain a CD of any MRI’s or CT scans. This allows individuals to be committed to their health care by reviewing this information, asking questions when needed, or pointing out inconsistencies or errors.

3. Prepare ahead of time. Prior to appointments or meetings, individuals should know their goals and desired outcomes. Specific needs and discussion topics should be prioritized in case time is limited. Advanced preparation can ensure appointments and meetings are productive, while also reducing nervous energy.

4. Ask questions. Individuals should ask questions to help avoid misunderstandings. They should never be ashamed of asking questions or requiring explanations. If a provider does not have an adequate answer, ask who is the best person to get the information you need. Frequently nurses are an excellent source of information and can guide you to the right people for answers.

5. Do research. Individuals who are able should research their diagnoses, treatment options, needed tests, future procedures, and medications. This can be done at a local library or online using only reliable and professional websites. A provider may offer a reliable website for research purposes. This can help individuals understand medical terms used by professionals or the aspects of treatment described.

6. Be assertive. While self-advocating, individuals should be active listeners, focusing on what a provider is saying rather than mentally preparing questions while the provider is speaking. They need to avoid letting emotions overwhelm the situation. They should not be afraid to voice their concerns if they disagree with a statement or decision. They should remain calm but also be firm.

7. Get information in writing. The process of writing helps the brain retain information. Sharing information in writing also helps ensure all parties are in agreement. Written documentation is good to have for future reference. Other options include asking if the provider is willing to have the appointment recorded (depending on the legal status of recording in the area), or take a family member or friend as a note-taker.

8. Believe in yourself. Individuals know what they need. The patient is most often the best source of information about what is going on in their body. Confidence is an essential part of self-care and advocacy.

9. Practice the three P’s. If phone calls or messages are not being returned or requests are not being fulfilled, individuals should practice the three P’s: being PATIENT, being PLEASANT, and being PERSISTENT. Medical professionals need a reasonable amount of time to respond to messages and requests. However, if an excessive amount of time has passed, individuals should politely and pleasantly repeat the request or ask if there is someone else who can assist them. Individuals should persist until the need is met.

10. Consider this relationship as a partnership. Most providers truly want to see their patients health improve. Avoid adversarial comments and attitudes. Give your provider the respect they deserve, and expect to be treated with respect and dignity. When you come to a provider prepared and equipped to have an informed discussion, you will see a difference in how you are treated and how the quality and effectiveness of the appointment improves. 

Sources: WebMD, U.S. Pain Foundation

Advocacy Update on S.2922/H.R.7164, The Advancing Research for Chronic Pain Act 

Written by Lisa Van Allen, Chair of the RSDSA Advocacy Committee, for the RSDSA blog.

Chronic pain and high-impact chronic pain are major burdens on the United States population and economy—leading to patient suffering, loss of productivity, as well as increased health care and disability costs. However, the Centers for Disease Control and Prevention (CDC) does not regularly analyze or publish comprehensive population research data on pain, as it does for other major diseases. This needs to change.

High-quality data is crucial to identify trends, risks, and consequences of pain, and to inform interventions aimed at improving care and patient outcomes while reducing costs to the U.S. health care system.

The Advancing Research for Chronic Pain Act, S.2922/H.R.7164, is one of only a handful of bills ever introduced in Congress for people with pain. This bill would facilitate the creation of a public website for sharing aggregated and updated comprehensive population health data on chronic pain.

We are asking you to take action today by emailing, calling, and/or tweeting your federal senators and representatives, and: Requesting that the Senate hold a full vote on the SUPPORT Act reauthorization, which includes this bill.Requesting that members of the House of Representatives co-sponsor H.R.7164, the Advancing Research for Chronic Pain Act.

It is through taking action by using our voices that we can bring about change. Thank you for participating in this critical advocacy effort. Here, you will find resources to help you quickly and effectively contact your legislators via email, phone, and social media.

We need consistent, high-quality data to gain a better understanding of the public health problem of pain, and to guide efforts to improve care and reduce related expenses. Currently, we lack data on the following related to chronic pain:

  • Frequency and occurrence of pain conditions
  • Demographic information such as age, race, gender, socioeconomic status, and geographic location
  • Effectiveness of evidence-based approaches
  • Utilization of medical and social services
  • Both direct and indirect costs
  • Risk factors, coexisting conditions, and health outcomes

Chronic Pain Facts & Figures:

  • Chronic pain is an enormous public health problem.
  • The number of Americans impacted by chronic pain is staggering: 51.6 million Americans, or 20.9% of U.S. adults, experience chronic pain, according to a 2023 CDC report.
  • Of that number, 17.1 million experience high-impact chronic pain that interferes with the ability to function on a daily basis.
  • Musculoskeletal pain is the leading cause of disability in the United States.Chronic pain has been linked to depression, anxiety, substance use and misuse, and double the risk of suicide.
  • New cases of chronic pain now outpace those of diabetes, depression, and high blood pressure in theUnited States.
  • Two-thirds of military veterans report living with chronic pain.
  • 78% of Medicare beneficiaries, and 89% of Medicare beneficiaries under age 65, live with chronic pain.

Please write or call your congressional representatives today and ask them to support S.2922/H.R.7164, The Advancing Research for Chronic Pain Act.

You can find your House representatives and Senators by entering your zip code on https://www.house.gov/representatives/find-your-representative and https://www.congress.gov/members/find-your-member

References, citations, and sources found in this resource can be viewed at https://uspainfoundation.org/advocacy/advancingresearchact

The Veterans Health Administration Approves and Pays for Ketamine Infusions for Retired Military

Infusions cover depression, PTSD and Chronic Pain including CRPS

A Special Thank You to Shara Wilkey (Capt., USMC, Ret.)

By James Doulgeris, Chairman, RSDSA Advisory Committee

The Veterans Health Administration, Military News and independent contracted clinics have confirmed that the VHA has approved and will pay for ketamine infusions, including travel expenses in certain circumstances, to treat treatment resistant depression, PTSD and chronic pain including CRPS. Your physician’s approval is required, of course.

While this program has been in effect for some time, it has not been made well known. In fact, we had no idea it existed until Shara Wilkey (Capt., USMC, Ret.) brought it to our attention.

Finding an infusion center near you may be as simple as an Internet search (be sure to use a search engine using an advanced AI engine like Google or Microsoft). You may, however, need to contact the one nearest you, and that may require air travel. The VA does pay for travel expenses; however, it may require the assistance of your U.S. House Representativ’s or Senator’s Office to cut through the red tape according to Capt. Wilkey.

It’s worth mentioning that having a companion accompany you during the infusion is mandatory. However, information regarding whether the expenses related to the companion are covered remains unclear, as we couldn’t find concrete details. The VA did not have this information readily available when contacted, and they are yet to respond to our inquiry. We will keep this report updated if any further information becomes available.

As always, we express our gratitude for your service and want to emphasize that we are here to assist. You can reach out to us at [email protected] for any inquiries or assistance you may need.