Category: Advocacy

By Lisa Van Allen, Chair for RSDSA’s Advocacy Committee

I was recently listening to one of my favorite podcasts, Hidden Brain hosted by Shankar Vedantam, where the guest was talking about her research into how people respond to overwhelming challenges. In the episode, “When It’s All Too Much,” Sarah Jaquette Ray describes how she found her students were overwhelmed by the problems in today’s world to the point of nihilism, deep depression and in some cases suicide. It was not a leap to compare these students to people living with Complex Regional Pain Syndrome, nicknamed “The Suicide Disease.”

Living with unrelenting pain can drive you to feel that life is meaningless. There are many losses on this journey of pain – mobility, career, relationships, and especially the image you had in your mind of what your life was going to be. Those losses chip away at your sense of self and the things that bring you joy. Surviving and thriving in the face of this darkness is not easy. It requires choosing hope and intentionally lining up activities that give you a sense of meaning and purpose. 

Sarah Jaquette Ray spoke about several things that she believes can combat this nihilism. I believe these techniques will work to offset the deep suffering that comes with CRPS.

→ Being part of a community rather than trying to face overwhelm alone is essential. Isolation is a normal response to feelings of grief and depression, but it is not a solution. Sharing your fears and griefs with others lightens the load. But make sure this group focuses mainly on hope. If you’ve ever been in a Facebook group where everyone is describing how awful their symptoms are, you know just how contagious darkness and depression can be. That doesn’t mean you have to be a ‘Pollyanna’ and only express positive thoughts. Just be sure to surround yourself with people who know how to encourage and support you.

→ Focusing on beauty in spite of the ugliness in the world. We live in a world filled with extraordinary beauty, but we tend to spend more time on destructive, ugly things coming at us from our phones, TVs and other media. It is survival, not escapism, to turn off the news and turn on NatGeo or Discovery.

→ Learning to hold joy and suffering at the same time requires emotional maturity. All or nothing, black and white thinking limits your capacity to cultivate joy and purpose. Simply holding out your hands and imagining that you are simultaneously holding joy in one and suffering in the other opens a window of opportunity in your mind. Yes, I am in pain – And I am enjoying this moment because I am ___________. How would you fill in the blank? For me it might be holding my puppy, or painting a picture, or sitting on my deck with the sun on my face.

→ Finding small ways to reduce the pain. I can’t completely eliminate my pain, but I can find little things that make it better. Soaking in scented epsom salts and then spraying on a moisturizer makes my CRPS affected foot look and feel a little better. Mindfulness meditation is not a cure, but even five minutes of mindfulness and relaxed breathing reduces the stress that builds from constant pain. Getting a massage on non-affected areas helps reduce stress and tension as well.

→ Building up your spirituality and/or faith. Research has demonstrated over and over that meditation and prayer reduces pain and helps with healing. Belief in a Power greater than yourself and your problems can bring great comfort.

→ Spending time in purposeful activities helps you feel better about yourself and combat those feelings of worthlessness. Write a letter to your congressman about legislation that would make life better. Write an article for the RSDSA blog or your newspaper. Join a support group and share your story. Participate in the RSDSA Virtual Walk and raise funds that make a difference. There are all kinds of ways you can make life better for yourself and everyone living with CRPS.

Depression can be a serious disease. If you find yourself struggling with feelings of sadness, grief, loss, and or meaninglessness that last more than a few days and lead to pervasive thoughts of harming yourself, please get help. Contact your medical provider or a mental health professional. You might find that treatment of your depression might help with your pain, as medications used for depression and anxiety have been proven to help with pain management. Instead of allowing darkness to overwhelm, choose to create a life of meaning and joy.

If you’re ever in need of help, please call the National Suicide Prevention Lifeline by dialing 988. You can also send a text to the Crisis Text Line by texting the word HOPELINE to 741741

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

I was recently asked for input on new legislation introduced by Rep. Marianette Miller-Meeks and five of her colleagues: Reps. Nannette Barragan (D-CA), Nicole Malliotakis (R-NY), Brad Schneider (D-IL), Rick Allen (R-GA), and Donald Norcross (D-NJ). The DRUG Act, or Delinking Revenue from Unfair Gouging Act, is a bipartisan bill that would rein in Pharmacy Benefit Managers (PBMs) requiring them to only charge a flat fee for drug placement versus letting them continue to charge a percentage of the drug price.

My response was a big YES – I support this bill and think you will want to as well. Here’s why:

The current structure in most pharmacies incentivizes PBMs to promote higher-priced medicine that takes money away from patients. PBMs are third-party administrators that manage prescription drug benefits for employers, health insurers, and other clients. They negotiate drug prices, process claims, and provide services such as drug rebates, disease management, and medication adherence programs. PBMs contribute to high drug costs because they are incentivized to steer patients towards drugs that are more profitable for PBMs, but may be less clinically effective for consumers. This broken system disproportionately harms low-income individuals, seniors, and those with chronic illnesses who rely on life-saving prescriptions to manage their health.

One of the challenges in demanding greater accountability from PBMs is the relative lack of information about how they operate. The drug pricing process overall is already opaque, and PBMs add another layer of secrecy. Most insurers contract with PBMs to handle the administrative side of their drug benefit provision. But PBMs have no obligation to share details with insurers about how the PBM determines formulary placements, why some drugs in the formulary are more costly than others, and what proportion of the rebates and negotiated drug payments PBMs keep. This presents a challenge for insurers, plan sponsors, and for patients who end up bearing the cost of medications they desperately need.

PBMs are a growing faction in the distribution and payment ecosystem for prescription medicines. As the entity between pharmaceutical companies and pharmacies, PBMs initially played a key role in reducing prescription medicine costs and increasing access and affordability for Americans. Unfortunately, PBMs have grown and vertically integrated to the point where the three largest PBMs control over 80% of prescriptions, up from 30% in 2010. There are six PBMs that make up most of the market: CVS (Caremark), Cigna (Express Scripts/Evernorth), UHC (OptumRx), Humana (Pharmacy Solutions), Magellan (Prime Therapeutics), and MedImpact Healthcare Systems. Their modern-day practices of driving up list prices to extract higher rebates for formulary placement are occurring at the expense of patients in the form of higher insurance premiums and higher prescription drug costs.

PBMs often bill patients more than what they pay to the pharmacy for medicines and keep the difference, enriching themselves instead of the patients they are supposed to benefit. This business practice, known as spread pricing, adds opacity to a supply chain that needs transparency. PBMs have attempted to rebrand spread pricing, calling it “risk mitigation pricing,” and contending that it provides predictability for plan sponsors and lowers drug cost. what spread pricing actually does is drive up costs without any accountability or explanation to the consumer.

Please write to your US Representative and ask them to support H.R. 6283, the DRUG Act, and start Delinking Revenue from Unfair Gouging.

You can find your representatives here.

Be sure to let me know what you think of the Drug Act. Do you have a story to share? We want to hear it!

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

Representatives Doris Matsui (D-CA) and Gus Bilirakis (R-FL) and Senators Amy Klobuchar (D-MN) and Roger Wicker (R-MS), co-chairs of the Rare Disease Congressional Caucus, reintroduced the Scientific External Process for Educated Review of Therapeutics (EXPERT) Act, which seeks to formalize the Externally-Led Scientific-Focused Drug Development (EL-SFDD) meeting at the Food and Drug Administration (FDA).

This legislation seeks to bridge the gap between rare disease expertise and regulatory expertise through the EL-SFDD. These quarterly meetings will provide an opportunity for enhanced collaboration between medical experts, drug sponsors, scientific organizations, and patient advocates to discuss the challenges impacting the development of rare disease treatments, identify scientific opportunities to facilitate development, discuss novel clinical trial designs, and align on endpoints to address unmet medical needs for rare disease patients. Each meeting will focus on a different rare disease topic, and the FDA will report annually on how these sessions are helping to shape and improve its internal review process for rare diseases. 

In layman’s terms, this would put researchers in the same room with patients and funders to work together toward shortening the timeline on the creation of drugs that treat rare diseases like CRPS.

For more on this bill, click here. 

Contact your legislators today and ask them to support the EXPERT Act.

When you contact your congressional representatives, be sure to also ask them to support funding for Medicare/Medicaid and FDA research. Budget cuts are coming and we need to remind our representatives just how important healthcare services and research are to us. If you have a specific story about how Medicare or Medicaid covers treatment you need, be sure to include it. And then share your letter with us – we want to hear your stories and have examples to share with others. 

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].

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.

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.