TranslateGordon Fox • June 27, 2023
Patient Education Committee Update
The Patient Education Committee has been busy in recent months! Some of the projects we’re working on or planning include:
Caregiver education :
We will develop guides to help family members, and friends know when patients need help and what steps (emergency room, call the doctor, additional medications) to take if they do.
Decision making:
- Understanding medical strategies: We will develop materials to help patients understand how doctors make medical decisions. For example, how do they decide to recommend (or not recommend) an ICD implantation or myectomy? And how should patients make their own decisions about these recommendations?
- Personal decisions that are affected by HCM: Many decisions HCM patients need to make aren’t one-size-fits-all. For example, should I have a child? Should I accept the offer of a job with physical challenges? We will be developing materials aimed at helping think out these decisions by examining their consequences, using decision trees.
There are a number of other things in the hopper. We are discussing ways to use new forums and new approaches to reach people who may have HCM. And in the not-too-distant future, watch for an update on our website! We are always happy to listen to suggestions, whether big (new projects) or small (say, an error on the website).
If there is a resource that you would find helpful, please email elena@4hcm.org , and she will forward it to the HCMA Patient Education Committee.
The post Patient Education Committee Update appeared first on Hypertrophic Cardiomyopathy Association.
HCMA Blog
Call to ACTION! Urge Congress to Invest in Medicaid and Medicare! No Cuts to these crucial programs!
Sixty years ago, Medicaid and Medicare were established when President Lyndon B. Johnson signed the Social Security Amendments into law. The programs were a larger part of Johnson's "War on Poverty" agenda to combat inequality. Sixty years later, Medicaid and Medicare are under attack in ways that we could never have imagined. With the passage of the One Big Beautiful Bill Act (OBBBA), $1 trillion was cut from Medicaid and Medicare―the largest health care cut in U.S. history. As a result of the budget package, more than 15 million people will lose health insurance, hundreds of rural hospitals will close, and approximately 51,000 people will die preventable deaths each year. Congress voted for this harm, and Congress can fix it. We need them to invest in Medicaid and Medicare in order to undo this damage. Click here to send a message to Congress telling them to invest in these critical programs, not cut them. OBBBA is the exact opposite of the "War on Poverty." The bill was passed with brutal cuts to health care to fund more tax handouts for the very wealthy. It took from the poor to give to the rich. The unpopularity of these cuts cannot be overstated. Eighty-three percent of the American public, including three in four Republicans, has a favorable view of Medicaid. Congress must hear from us loud and clear: reverse course, undo the harm to Medicaid and Medicare, and protect health care for more than 71 million people. Join us in sending the message to Congress to invest in these critical programs, don't cut them. 1 The Truth About the One Big Beautiful Bill Act’s Cuts to Medicaid and Medicare 2 Research Memo: Projected Mortality Impacts of the Budget Reconciliation Bill 3 Medicaid keeps getting more popular as Republicans aim to cut it by $800 billion
Summer, greetings to all our big-hearted friends As July approaches, our focus is already on the fall and preparing for some major events, including our annual meeting coming up in October. July will also find us on the west coast in Seattle conducting a regional patient education meeting as part of our big-hearted warrior tour. We have been following the generic drug quality issue in the United States very closely and encourage you to watch the series starting with our Hill briefing in April and following with the additional webinars with our partners at Medshadow and the People's Pharmacy, and of course the ProPublica series of articles. See them all here . We are happy to have a new team member on board - we welcome Pam as our coordinator of both our All Hearts Collaborative and Hearts and Minds project. Over the next few months, you're going to be learning more about these two amazing initiatives and how we are working to provide better services for big hearts regardless of where you live, so we are meeting all of our big-hearted friends where they are. Please stay tuned for updates from these projects coming soon. We are also creating new volunteer opportunities and engagements that we hope will make it easier for you to participate in spreading the message of the importance of diagnosis, the importance of community readiness related to CPR and AED use and, of course, helping patients get to their ultimate diagnosis and getting them on the proper treatment pathways. This July I would like to recognize all of the special birthdays in my family, including HCMA Center of Excellence coordinator, Stacey Titus-brown and my daughter Rebecca Salberg. It's a milestone birthday for Becca - it’s hard to believe I have a 30-year-old child. Wishing you all a happy and healthy summer. Go build some memories!