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Veteran Voices For Fibromyalgia 2024 Advocacy Initiatives

Updated: May 17

STATE GOVERNOR PROCLAMATION REQUESTS FOR FIBROMYALGIA AWARENESS DAY, WOMEN VETERANS DAY., AND CONGRESSIONAL RESOLUTION REQUESTS SUBMITTED BY VETERAN VOICES FOR FIBROMYALGIA TEAM MEMBERS:

  • 2024 Fibromyalgia Awareness Day Proclamation Initiative: 35 VVFF Team Members submitted Proclamation Requests, for May 12th which is Fibromyalgia Awareness Day, to 35 Governors/City Mayors.

  • 2024 Women Veterans Day Proclamation Initiative: 32 VVFF Team Members submitted Proclamation Requests, for June 12th which is Women Veterans Day, to their respective State Governors.

  • 2024 Congressional Resolution for Women Veterans Day: VVFF founder, Kristal Kent, noticed no resolution for Women Veterans Day has been presented in Congress. Kristal reached out to her Congressman Max Miller, requesting his consideration on presenting a Women Veterans Day Resolution for June 12th, 2024. Kristal also provided a resolution template to the Congressman's staff. At this time of this post, Congressman Miller's staff will check if a resolution is currently in the House VA Committee. If not, his staff will work the channels of Congress to push through a Resolution for Women Veterans Day 2024.


PRESIDENTIAL FIBROMYALGIA AWARENESS DAY SUPPORT:

  • VVFF Founder, Kristal Kent, submitted written requests, for celebratory letters to honor Fibromyalgia Awareness Day, to the current and previously served, Presidents of the United States. Thus far, Kristal Kent has received correspondence from President George W. Bush’s Office on March 14th, 2024.

FUNDING FOR SPECIFIC DRIVEN FIBROMYALGIA RESEARCH THROUGH THE NATIONAL INSTITUTES IF HEALTH:

  • Veteran Voices For Fibromyalgia (VVFF), in collaboration with the Support Fibro Network, is establishing relationships with the Senators who serve on the appropriations sub-committee of Labor, Health, Human Services, Education etc. VVFF Team Leader Kristal Kent has called all 17 Senators on the sub-committee. In addition, Kristal has sent emails to many of the Senators on the sub-committee, along with identified 7 of 8 Constituents, whose Senator serves on the sub-committee. The 7 of the 8 Constituents identified are Veteran Voices For Fibromyalgia Team Members. In March 2024, Appropriation funding requests were submitted by the Support Network in D.C. In addition, Kristal Kent submitted appropriation requests online through the Senator Shaheen, Senator Baldwin, Senator Britt and Senator Graham's web portal.

  • In addition, Veteran Voices For Fibromyalgia (VVFF) and the Support Fibromyalgia Network (SFN) conducted a Patient Driven Research Survey, polling over 2,000 Fibromyalgia patients from various countries, to identify the statistical prevalence of Fibromyalgia in Families. While the root cause of Fibromyalgia is unknown, it is often cited by tax-funded health specific institutes, medical schools, healthcare systems and medical providers that if there is medical history of Fibromyalgia in families, an individual has a higher risk of developing Fibromyalgia. Yet, no research specific to identified increased risk of developing Fibromyalgia has been done. Thus, VVFF and SFN filled this research gap to identify the statistical prevalence of Fibromyalgia in families. More information and results of this research will be shared soon.

 

INCONSISTENCIES WITH VA DELIVERY OF TELEHEALTH MEDICAL APPOINTMENTS:

 

  • Veteran Voices For Fibromyalgia identified inconsistent in the delivery of the VA’s telehealth medical services to Veterans including Veterans running out of prescribed medications as a result. An independent poll of 518 Veterans, conducted by Veteran Voices For Fibromyalgia, found:

  • 62% of Veterans polled had a VA Medical Provider either not show for a scheduled telehealth medical appointment or their appointment was cancelled last minute

 

  • Further, of the 518 Veterans polled, it was also found that 52% of Veterans needed medication refills but ran out due to the VA Medical Provider to showing for the scheduled telehealth appointment or cancelling the Veteran’s appointment at last minute.


  • Kristal Kent has previously spoken with Congressman Max Miller (Ohio) about this issue, along with VA Senate Committee members, Senator Jerry Moran’s staff (Kansas) and Senator Sherrod Brown’s (Ohio) staff about this issue.

  • Moving forward, beginning in June 2024, Veteran Voices For Fibromyalgia will call on Congress and the VA Senate Committee to investigate this issue further. VVFF efforts will include advocating for a national poll, to determine how pervasive this issue is regarding inconsistencies of the delivery of Telehealth Medical Appointments which led to Veterans running out of prescribed medications, and the lack of avenues for Veterans to obtain refills on their medications, when provides miss scheduled Telehealth or in person appointments.

  • On May 15th, 2024, Kristal Kent spoke with the Secretary of Veteran Affairs, Dennis McDonough. You can watch/listen to her presentation at the link below. Go to 53 minutes and 25 seconds of the video: https://www.youtube.com/live/jnX8i_7TrB8?si=8l6nD8PgWY1aGFxY

  • To learn more about VVFF's Advocacy Initiative regarding the delivery of VA Telehealth appointments click on the link here: VA Telehealth Medical Services Fails Veterans (veteranvoicesforfibromyalgia.com)

 

VVFF SUPPORTING SEVERAL LEGISLATIVE ADVOCACY EFFORTS:


  • VVFF is supporting the following legislation: VVFF supports the expansion of The Richard Star Act which would not cut funding of the VA Community Care Medical Program by 34.4%. VVFF supports the Senate Bill S. 3452, aka the ‘Fred Hamilton Veterans’ Lost Records Act, which would ensure veterans whose military records are lost by the U.S. government, can still receive their earned Department of Veterans Affairs (VA) benefits. Side Note, in 2011 the Department of the Army lost all of Kristal Kent’s military records. While she had her military records in paper form, on May 23, 2019, a roofing company accidentally set her home on fire, which destroyed about 80% of her military records. Kristal’s experience is an example of why this legislation is integral, to ensure Veterans have a fair opportunity when applying for VA benefits.

  • VVFF also supports the Ohio House Bill 90, which would authorize property tax exemption, for disabled veterans and their spouses/widows. This bill has stalled in the Ways and Means Committee.

  • VVFF Team Members in Ohio are advocating the committee move the bill forward in the legislative process. In addition, VVFF submitted an advocacy letter of support for the California State Bill, AB 2180, to end copay accumulator policies in California, to ensure that third-party patient copay assistance – provided on behalf of eligible patients with chronic or terminal conditions to help them afford their prescribed medications – counts towards patients’ annual out-of-pocket cost-sharing obligations with their commercial health plans.


VVFF TEAM MEMBERS PROVIDE MUCH NEEDED RESOURCES AND SUPPORT TO LOCAL COMMUNITIES:

  • VVFF Team Leader, Kristen Thomasino through her entities, Thomasino Media and BuddyTown LLC created the “Social Good Conferences.” This conference showcases “Citizens in Action,” who are working towards improving systems, positively impacting marginalized communities, and supporting those in need. The “Social Good Conference” showcases several speakers who are Veterans, Individuals living with Fibromyalgia, and Individuals living with other Chronic Illnesses. This conference is free to the public and available to watch on several streaming and social media platforms, including YouTube. VVFF will also be sharing these interviews throughout the month of May and June 2024.

 

  • VVFF Community support efforts: Thus far in 2024, VVFF has supported Serving Area Military and Veterans (SAM Center), raising funds of $1200 in 3 days, collected nonperishable foods and toilet paper, to donate to Sam Center. VVFF Team members have supported Little Blessings Veteran Community Outreach, through donations, to support their programming that provides Equestrian Therapy, to help reduce risk of suicide among Veterans. Team members of VVFF have donated their time supporting non-profits who work towards reducing homelessness among the Veteran population in California. Finally, VVFF Team Leader, Anu Datta, has also worked with local officials to promote awareness and support for youth and adolescents struggling with mental health, including assisting the local school district in Durham, North Carolina, with obtaining proclamations to promote “Student Mental Health Awareness Day.”


  • VVFF Founder Kristal Kent was a Guest Editor and Writer for the Ohio Legislative Report, April 2024 Edition, in which Kristal wrote the article “Building Relationships with Legislators.” Read the article here: Ohio Legislative Report.pdf


Check back for updates on Veteran Voices For Fibromyalgia's 2024 awareness and advocacy initiatives!



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