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By Erica Friedman June 26, 2025
Investigative journalists Debbie Cenziper, Megan Rose, Brandon Roberts and Irena Hwang from Pro Publica and NPR have concluded a 14-month long investigation into the quality of generic drugs coming into the United States from overseas. Among the many voices that spoke up for American patients was HCMA Founder and CEO, Lisa Salberg who has felt the effects of low-quality drugs personally. Salberg believes that fixing this problem is something we can do, even in this time, when even health care is highly politicized. Read the key takeaways from ProPublica’s 14-month investigation into the FDA’s oversight of foreign drugmakers in Threat in Your Medicine Cabinet: The FDA’s Gamble on America’s Drugs .
A light blue and dark blue paintbrush stroke intersect to make a stylized
By Erica Friedman June 18, 2025
Alnylam press release on the European Commission approval of AMVUTTRA® (vutrisiran) forwild-type or hereditary transthyretin amyloidosis in adult patients with cardiomyopathy (ATTR-CM) as an additional indication
Light & dark blue brush stroke that intersect create an abstract letter 'a' next to the word Alnylam
By Erica Friedman June 17, 2025
AMVUTTRA® (vutrisiran) has been approved by the U.S. Food and Drug Administration (FDA) to treat ATTR-CM in adults.
A pregnant woman and partner make a heart with their hands over the baby.
By Sabrina Cuddy June 12, 2025
Pregnancy is a stress on the body even for healthy people. When we have a serious disease, we tend to have even more questions. Health Educator Sabrina Cuddy answers some of the most common questions about HCM and Pregnancy.
Two Caucasian women face a computer monitor. One wears casual clothes, the other a lab coat.
By Gordon Fox June 9, 2025
In the fifth in a series. Gordon Fox, PhD. looks at the impact of risk estimates in HCM and delves into what it means if the risk estimate seems off.
By Lisa Salberg June 9, 2025
June 2025 is upon us and with it comes a great deal of mixed emotions for me and the basis of the founding of HCMA. Origin stories how things began has become quite a topic for Disney movies and marvel comics. But today I'm going to talk about origin stories from the HCMA. The services of the HCMA are based upon lived experience from real patients seeking better care and a chance of a future. Why are bases of intake and navigation calls? They are the starting point for deeper understanding of the condition and access to care. Because on a June day in 1995 my sister, who was 36 years old at the time, was in a situation we could never have predicted. And, at that moment in time, having more knowledge and understanding of the disease could have played important roles in decision-making prior to her cardiac arrest and after. On June 6th, 2025, my sisters held a baby shower for me excited at the prospects of their new niece coming in July. June 12th 1995. My sister would have a cardiac arrest and we would wait for her to wake up. Like any family who has waited for a cardiac arrest victim to wake up or not, nothing could have prepared us for what lay ahead. June 16th, 1995 my sister was pronounced dead and in the early morning hours of June 17th her organs were procured and given to others in hope of saving their lives. On Father's Day a wake was held. The following day was her funeral. I don't think I will ever forget the look on my father's face as he stood next to his daughter's coffin on Father's Day. But I had not considered, on that day, and because my brain couldn't handle it, was that when my father was 18 years old, he stood next to his father's coffin on Father's Day, which also should have been his graduation day. On June 21st, 1953 my grandfather had died from a sudden cardiac arrest at the age of 43. 17 years ago my father also passed on June 7th, 2008. On June 16th, 1990, a few short weeks after my wedding, I thought I had a headache and that was unusual. It was actually a stroke, one of a series of strokes that came after I had received dental work without antibiotics and developed endocarditis and multiple clots formed throughout my body. June always makes me a little nervous…and it reminds me of the fraility of human life. As with any other month of the year, good things in June have happened for our family as well, including my sister and brother-in-law's wedding and her birthday. Happy anniversary, Lynn and Kevin! It was also my mother's birthday and on my mother's birthday in 1976, my life was made better by my new neighbors and lifelong best friend coming into my life. It's hard to believe it's almost 50 years ago. So on this June 2025 this month's message will not be about the places that I've been in the past month or where I'm going next month. It will be to remind you all that this community was built because of one special woman. Her name was Lori and she was my sister and she will always be at the heart of our big-hearted community. I miss you Lori! Today and always. Please take a look at our calendar of events for June and July. We have some great programs coming up including an in-person event in Seattle. I hope to see many of you there. Make some good memories this June Sincerely, Lisa
A mixed race family in denim walks down a road, the child on a tricycle
By Sabrina Cuddy June 4, 2025
Experts agree that exercise is healthy for people with HCM. Depending on symptoms, most people with HCM can safely do at least light exercise. Learn more in this month's blog pog post by Health Educator Sabrina Cuddy.
By Julie Russo June 4, 2025
Nevada Adopts Component of Children's Cardiac Safety Bill introduced by HCMA Legislative Advocate Jane Grossman
Cytokinetics Logo of a green
By Erica Friedman May 14, 2025
Positive clinical trial endpoints for MAPLE-HCM study announced by Cyctokonetics for aficamten in obstructive hypertrophic cardiomyopathy
A Caucasian hand with a pen rests on a clipboard that holds paper with writing.
By Gordon Fox May 14, 2025
In the third of a series about decision-making and risk in HCM, Gordon Fox explains where risk data comes from and how to understand it.
4 diverse people stand under the mathmateical formula 25% = 1 in 4.
By Gordon Fox May 13, 2025
In part three of this series on decision making in HCM, Gordon Fox discusses how medical professionals define risk within a patient population, and what the different kinds of risk mean for a patient.
By Lisa Salberg May 7, 2025
I do not claim to be a political expert, but I do know what I am - a passionate patient advocate who has seen how systems can work for and against patients, and someone willing to put thought into action, to create a plan to make healthcare safer for a population that has long been ignored and at high risk. As we prepared to take 30 patient advocates to Capitol Hill to discuss matters of importance to the community, we monitored the activities inside Washington DC. The floor kept shifting under us week after week as we attempted to prepare a cohesive message attached to policy that had a good chance of both being bipartisan and moving forward. Please go back and look at your news headlines between the beginning of February and the end of March - it was chaotic, and it sometimes appeared schizophrenic. But we had to keep searching for areas in which we could find some base definition of what it means to be a citizen or resident within the United States. There is a slow, simmering issue that has had my attention since approximately 2007, something that reaches beyond the borders of cardiac disease but gets to the very core of our shared humanity. We will all certainly need a medication, a supplement, or a food additive to ingest into our bodies at some point in time. In the late 2000s, Dr. Harry Lever of the Cleveland Clinic brought something to my attention - an observation about generic drugs not functioning in a predictable manner. To say we've talked about this hundreds of times would be a gross understatement, it's more like thousands of times over nearly two decades. You see, Harry Lever is a really unique mix of old school cardiologist and Detective Columbo, always searching for clues to the puzzle to unravel and find the bad guy. Harry and I shared observations about patients with HCM who had previously appeared stable, with no comorbidities, no lifestyle changes, no recent domestic or workplace stressors - things seemed really normal for these people, yet their symptoms vastly changed nearly overnight in some cases. Over the years other drug quality problems had come to my attention, including deaths related to a heart transplant medication I take, called tacrolimus. Eventually Harry put me in contact with other individuals who also were sharing our observations. There was a radio show producer named Joe Graedon, a researcher in Utah, named Erin R. Fox, and a pharmacist by the name of David Light. David and I had spoken a number of times and he shared with me some of his scientific findings which were quite alarming. I learned of the process of “dissolution” and how different molecules responded differently to the dissolution process and thereby would absorb differently within your body. This impacts the mechanism of action which, in my case, was to keep my heart protected from my body attacking it as a foreign entity. I learned of the problems with generic drug manufacturers through the writings of Katherine Eban ( Bottle of Lies , Harper Collins ecco, 2019 ), and Rosemary Gibson, ( China RX , Prometheus, 2018) an advocate on behalf of patient safety on multiple planes within the ecosystem. This small band of advocates is trying to sound an alarm throughout the country. Now it is time for the productive and equitable deployment of the shared efforts to keep every one of us safe and healthy. That is what we went to Capitol Hill to talk about. There is a mechanism within the National Defense Authorization Act, a piece of legislation that is voted on each year to provide funding for our national defense. It is a type of legislation that typically moves unopposed through the process as we all seek to have a strong national defense. Within this act we are advocating the Department of Defense to support the NDAA amendment “Transparency and Quality in Pharmaceuticals Act,” to support the proposed ARPA-H project “Create and Deliver Actionable Transparency to Drug Quality.” We encouraged the VA to join with the DoD project and drug procurement reform efforts. 2025 VA Appropriations language already present in House section “Prescription Drug Quality” and Senate section “Drug Quality Scoring,” and the FDA to use DoD drug quality data to further inspect “red” rated manufacturers and reward “green,” to set a “zero toxins goal” in medicines similar to EPA’s goals for water and air, and to work collaboratively with independent testing efforts similar to Europe’s approach. Lastly, we encouraged the NIH to research drug quality to better identify issues, their public health impact, and strategies to best address them. So, as we walked around Capitol Hill inviting legislators to come join us at a briefing to learn more about these initiatives. We had meaningful discussions with various members of each office’s internal administration. We spoke to legislative assistants, healthcare advisors, defense advisors, Legislative Directors, Deputy Chief of Staffs, and Health Policy Advisors. In total we met with 24 offices. This and the briefing offered them a deep appreciation for the community we are and the problem we seek to solve - primarily the quality of generic drugs in the United States. Secondarily, we spoke of step therapy and prior authorization and the meaningless waste of time, effort, money and life quality by delays costing 1.3 billion dollars a year in waste fraud and abuse. The waste and fraud is being perpetrated upon healthcare systems, physicians and patients as we waste our time and precious resources playing a game that serves no one and costs, time, money and frankly the reputation of the health insurance systems themselves. It's time for us all to be reasonable adults; to fix the problems that we know are fixable and stop fighting about the differences in how to do it. Let's start negotiating how we all can benefit from better health systems and better access to safe high-quality low- cost generic drugs. If there is anybody who has an argument as to why anything I have said about these issues is not good for all Americans, I welcome the conversation. Let's talk it out and understand how we can see the world with such different philosophies.
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