This week I had the incredible privilege of serving as an advocate for the American Heart Association (AHA) on behalf of the residents of Connecticut. I joined three others from our state as we traveled to Washington D.C. to share our stories and urge our members of Congress to support three bills that align with the AHAs mission of, “Building healthier lives free of cardiovascular diseases and stroke.” In total we were 330 advocates representing 46 states participating in 284 meetings on Capitol Hill.
Sunday, June 25th was my 48th birthday and I knew that doing this was an incredible way to start my 49th year. It was also bittersweet. I was with a friend on Sunday, road tripping from Baltimore to D.C. and singing Wham’s “Club Tropicana” when I realized that this would be the first time since I was 15 and discovered George Michael and I shared the same birthday that we wouldn’t both be celebrating. Thinking about how he passed away on December 25, 2016 (our half birthday), it took me back for a moment. A moment where I realized this is exactly why I was going to D.C.
Monday was filled with training sessions to prepare us for our lobbying efforts. I participated in one meeting where we role played what our responses would be to opposition messaging and another that focused on how we can best communicate with and influence the current members of congress. In these sessions, not only did I learn a great deal, but I had the opportunity to network with other survivors, listen to their stories and gain new perspectives on the issues.
We then attended a Hero’s Luncheon emceed by a woman I am blessed to call a friend, Lisa Bayha Deck. She shared her incredible story as a four time stroke survivor and her diagnosis with Moyamoya, a disease in which arteries in the base of the brain are constricted, restricting blood flow. We heard from several other survivors whose stories provided us with more inspiration, knowing what we were there to do would make a difference.
As our afternoon continued, we were briefed on the issues we would be discussing with our lawmakers. Leading up to this day, we were prepared for three asks, but with the looming vote on the American Health Care Act (AHCA), we knew we had more work to do!
- Increase National Institutes of Health (NIH) budget by $2 billion for 2018 – The NIH invests only 4% of its budget on heart research and a mere 1% on stroke research. These levels are disproportionate to the number of people afflicted by cardiovascular disease (CVD) and the economic burden that comes with a diagnosis. At a cost of nearly $1 billion a day, CVD tops the list as the nation’s #1 and most expensive killer. Personally, I hope that out of that we are able to secure opportunities to conduct more research in congenital heart defects as well as research the includes more women and/or is more specific women’s heart disease. Wanna stop the nation’s #1 killer – DO MORE RESEARCH! I’m not proud that I am part of a statistic that was damn near close to killing me, but I am baffled that with all those dying of heart disease and stroke we aren’t trying a little harder in the United States to learn more about it and work to prevent it!
- Furthering Access to Stroke Telemedicine Act (FAST Act) H.R. 1148/S. 431 – Stroke is the number 5 killer in the U.S. and a leading cause of long-term disability as well as the second leading cause of dementia. Time is critical for stroke patients, and those eligible to receive the recommended clot-busting therapy within the 3-4 1/2 hour wind after symptoms begin are at least 30% more likely to have minimal or no disability. Unfortunately, only 3-5% of eligible stroke patients receive this life saving therapy. Expanding the use of telemedicine will increase the number of patients able to receive these drugs, but Medicare will only reimburse telehealth services in rural areas. There is a misconception that living in an urban or suburban area allows patients to access care more quickly, but in many instances that is not the case. We were fighting to have Medicare eliminate the restriction allowing for more widespread use of telestroke services.
- Expanding Access to Cardiac Rehabilitation Services H.R. 1155/S. 1361– It has been shown that cardiac rehabilitation services reduces mortality, repeat hospitalizations and use of medical resources while improving a patient’s quality of life following a cardiac event. However, only about 30% of eligible patients take advantage of cardiac rehab. To receive reimbursement under Medicare, cardiac rehab services must be provided under the direct supervision of a physician – meaning that a physician must be at the site of the program (within 200 yard of the patient) and immediately available and accessible at all times. This has created a severe barrier in access, especially in rural areas where physicians are scarce. We hope that by amending the existing requirements for reimbursement to allow physician assistants, nurse practitioners and clinical nurse specialists to supervise cardiac rehab on a day-to-day basis will increase access to the much needed services. I know there was never a physician present when I completed my cardiac rehab and I always felt safe. I mean, I was hooked up to heart monitors and my blood pressure was checked throughout the sessions. I know that if something happened, the staff there would have done the same thing a doctor would have – call 9-1-1 to get me to a hospital, begin CPR and utilize an AED. Even I know how to do those things! If you don’t know someone who has benefited from cardiac rehab, even as a 44-year-old heart patient, it was critical to my recovery – physically, mentally and emotionally. It helped build my confidence and alleviate the fear that simply walking wouldn’t cause me to drop dead! Don’t believe what I have to say about the importance of cardiac rehab? Click here to take a listen to author, personal trainer and host of “The Biggest Loser” Bob Harper who went into sudden cardiac arrest on February 12, 2017. He shared why cardiac rehabilitation was so important to his recovery.
- Oppose the American Health Care Act (AHCA) and any Senate substitute – The American Heart Association has adopted a set of health care reform principles that requires any changes to current health law to preserve and expand access to affordable and adequate health care coverage. The House passed AHCA would cause 22 million Americans to lose health care coverage and reduce access to affordable coverage for low and middle income individuals and families. It would also allow states to reduce protections for patients with preexisting conditions and allow employers and insurers to bring back annual and lifetime limits. The AHCA would impact every person you know, and not in a positive way. In our home, where three out of four of us have preexisting conditions, the AHCA would significantly impact our household in ways I’m too afraid to even think about.
After our briefing on Monday, we all went our separate ways. As we were dining, enjoying our evenings getting to know each other and network, some members of the Senate were preparing a sit-in on the steps of the Capitol! Several of us from the AHA Founders Affiliate (CT, MA, ME, NH, NJ, NY, RI, VT) were relaxing in the hotel lobby when I received a text from Tom. He was back at home in Connecticut on Twitter and sent a message, “Now get your butt to the Capitol!” He saw a tweet from Senator Christopher Murphy (D-CT) that several Senators were protesting the AHCA on the steps of The Capitol! I shared the news with several others I was sitting with, got a group together and made our way to Capitol Hill. We arrived just before 11:00 p.m. and were there for the tail end of the event, but to have made it there and see the final remarks of Senator Cory Booker (D-NJ) was incredible! You can click here to see the video I captured and posted to YouTube. At the end of the event, we had the opportunity to grab a moment with Senator Murphy and tell him about our scheduled meeting with his office the next day. This would be the only time we would see him, but we knew we had his support.
Tuesday was our time! We started bright and early with words from American Heart Association CEO Nancy Brown and our guest speaker Bob Harper. Harper shared the story of his heart attack proving that it doesn’t matter who you are, how physically fit you may be, we all need to care for our hearts. While you wouldn’t think we would have much in common (other than both having roots in Tennessee and a love for Broadway), out stories are eerily similar. We have now both become a part of an exclusive club that we wouldn’t want anyone else to join, yet we are so thankful our memberships were accepted. Thanks to quick action, Hands-Only CPR and the use of AEDs, we are both alive to share our stories and fight for our hearts and the hearts of every American.
We met with our Connecticut contingent in preparation for our five meetings that day. While we weren’t able to meet with any of our representatives directly, we did have great meetings with staffers from each office. We shared our stories and heard some of their own personal stories as well. All of the offices were understandably overwhelmed with the AHCA, but were extremely receptive to our asks. We were thankful to have Rep. Elizabeth Etsy’s support and commitment to seeing through Furthering Access to Stroke Telemedicine Act (FAST Act) H.R. 1148 as a co-sponsor. Our day was successful as we opened doors, minds and hearts to our requests and feel confident that with further conversations, we will secure definitive support from our representatives.
In between meetings, we also watched as the Senate Democrats held a press conference where they shared photos and stories of constituents from their states who would suffer, many of whom would die, if the ACHA were to be passed. It was powerful to be there as we watched our Senators join in the call for a no vote.
It was an exhausting two days. It was an inspiring two days. It was an emotional two days. It was an empowering two days. It was the opportunity of a lifetime. I was so proud to have been there – sharing my story, lending my voice and working to create change that could help countless numbers Americans as we worked to #LiftTheBurden.
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Whole Hearted Leigh 