A Special New Year’s Message from Alliance President and CEO Sue Peschin

Show Notes

What does 2021 have in store for the Alliance for Aging Research and older adults in general? In this first episode of season 2 and 2021, Alliance President and CEO Sue Peschin shares her thoughts on the new year.

Episode Transcript

Sue Peschin:

Hi everyone, and welcome to This is Growing Old, a podcast from the Alliance for Aging Research. I’m your host, Sue Peschin, President and CEO of the Alliance for Aging Research, and I’m thrilled to welcome you to our second season. Thanks to each and every one of you who tuned in for our first season, we hope you’ve enjoyed listening so far, and to those of you who are joining us for the first time, welcome.

A new year and a new season means a few new things for the podcast. You’re going to hear some new voices on our upcoming episodes, and I’m really excited for you to meet them, but first today, it’s just me. I want to share a few thoughts with you to reflect on the end of 2020, and as we face a new year in uncertain times, so let’s get started.

So, 2020 was a challenging year for just about everyone, but I think we can all agree that it was especially challenging for America’s older adults. 80% of all COVID-related deaths were people aged 65 and older, showing that the pandemic was impacting our older family members and friends more than any other single group of people in the United States. In 2020, the Alliance worked to help older adults during the COVID-19 crisis in a variety of ways, by providing reliable information and support about ways to reduce risk, recognize symptoms, and where to reach out for help.

Despite all the information, though, that I had access to on COVID-19, I wasn’t able to prevent my mom from getting it. My mom lived in Pittsburgh where I grew up, while I live in Maryland with my family. My mom is 79 years old, and she has mobility issues, which my stepdad helped her with on a daily basis. Unfortunately, my stepdad Lee got into a serious car accident in early November, putting him in the trauma ICU. My mom needed help at home, as well as transportation to go to and from the hospital, so I secured home care from a local group. I knew that home care workers didn’t have access to PPE like hospital staff did, and that we were taking a risk.

After two weeks, my husband and I traveled to Pittsburgh to bring my mom to our home in Maryland, and without knowing it, my mom had been exposed to COVID-19, as had we, and everyone in our house ended up getting it. My husband and I were down for the count for just a few days, but that was it, and our kids were mostly asymptomatic, but after getting progressively worse for two weeks, my mom ended up in the hospital for five days. She had pneumonia and needed oxygen, plus the full regimen of therapeutics, and ongoing rehab to recover her strength after. It was terrifying, but we’re incredibly grateful that she made it through. Unfortunately, my stepdad Lee passed from his injuries on the last day of 2020. We miss him terribly.

Many people experienced unimaginable losses this past year, and to those of you listening that suffered sickness or loss, we at the Alliance are thinking of you, and our hearts go out to you. Please reach out and connect with us if you need help, and we’ll do our best to help.

Although it was a tough end to a tough year, I’m thankful for a lot. We had friends and colleagues who sent meals and checked in with us, healthcare professionals that took excellent care of my mom, the researchers and the companies that developed the COVID-19 treatments she received, and the regulatory agencies like FDA and CDC that made sure they were safe and effective for use.

The ramp-up of COVID-19 vaccine distribution is extraordinary, and it’s a much-needed dose of hope. And in December, we at the Alliance were thrilled to help launch and co-convene the COVID-19 Vaccine Education and Equity Project with HealthyWomen and the National Council on Black Aging, two very well-respected national groups. The project is made up of more than 125 organizations, and our mission is to provide information about the clinical trial process, regulatory review, distribution and access to COVID-19 vaccines in a way that promotes equity and trust, and I invite you to check it out at covidvaccineproject.org.

Another issue we’re really passionate about is reducing out-of-pocket costs for Medicare beneficiaries. For older Americans who receive drug coverage through Medicare Part D, there’s currently no annual limit on out-of-pocket costs, and this is a huge problem. One in five adults aged 60 and older report struggling to pay for their prescription medication, and nearly one in four adults with a chronic condition report that they stopped taking a prescription medication due to the cost. That’s not acceptable.

Not filling, delaying, or curtailing the use of prescription medications can have life-threatening consequences, so the Alliance for Aging Research started Project LOOP, and LOOP stands for Lowering Out-Of-Pocket, and we started this in 2020 to urge Congress to act immediately to address undue cost burden on older Americans. Project LOOP advocates for the creation of an annual cap on beneficiary expenditures, and cost-moving, which would allow patients to spread out expenses over a period of time, rather than having to pay all at once, to lower out-of-pocket cost burden in Medicare Part D. In 2021, we’re looking for personal stories on high out-of-pocket costs in Part D, and if you or someone you know wants to share their story with us, send us an email to let us know you’re interested at [email protected], and we’ll give you more information on how to go about submitting your story.

The Alliance will continue to speak out against the shady practices of the Institute for Clinical and Economic Review, or ICER for short. ICER is a private entity with a lot of influence, and they create cost analysis reports for health insurance companies. The health insurance companies use the ICER reports to justify denying patients access to innovative medical treatments, and the way they do this is ICER uses an outdated, discriminatory health economics measure called the quality-adjusted life year, or QALY. QALYs place a higher value on treating younger, healthier individuals, over treating older adults and people with disabilities, and I encourage you to visit icerfacts.org to learn more, sign up to get our alerts, and get involved.

All right, now I want you to mark your calendars, because we are looking forward to Heart Valve Disease Awareness Day on Monday, February 22nd, so it’s just a few weeks away. And for those of you who don’t know, heart valve disease involves damage to one or more of the heart’s valves. While some types aren’t serious, others can lead to major complications, including death, and these problems increase with age. About one in eight people age 75 and older are estimated to have moderate to severe heart valve disease, and unfortunately, awareness of heart valve disease is alarmingly low. We talk a lot about heart attack and stroke, not too much about heart valve disease.

So the potential seriousness of the condition and the current lack of awareness are the reasons why the Alliance partnered with other national organizations to have Valve Disease Awareness Day listed by the U.S. Department of Health and Human Services on its National Health Observances calendar. That just means it’s official. So this year, we’re going to be celebrating our fifth annual observance virtually, and everyone is welcome and encouraged to join us. You can visit valvediseaseday.org for more information, it’s going to be shown right on the website, and we’ll also be talking more about Valve Disease Day in our next episode of the podcast.

Also in 2021, the Alliance is expanding our Talk NERDY To Me program. NERDY stands for Nurturing Engagement in Research and Development with You, and it’s an annual program funded since 2017 by the Patient-Centered Outcomes Research Institute, also known as PCORI, and our goal is to train older adult patients and family caregivers to use their experience to improve the research process, and learn how to best advocate for themselves and others.

Research shows that involving older adult patients in decision-making about their healthcare leads to better patient outcomes and better satisfaction with care. Older adult patient and family caregiver engagement in research is more critical than ever to the Alliance’s overall mission. Last year, we were excited to train 40 older adult patients and family caregivers, and we look forward to training even more in 2021, and it’s going to be virtual again this year, so we can help people from all over the country. If you’re interested, please visit us at agingresearch.org/nerdy, and get NERDY with us.

So, we know that there are still a lot of challenges with COVID-19 ahead of us in 2021, and Dr. Fauci and other medical experts say it’s likely to get worse before it gets better. But the good news is we have two vaccines available, and more on the way, and when your turn comes, please get vaccinated, don’t wait. Continue to wear a mask, and in fact, the latest research suggests we’re even safer if we double up and wear two masks. So wear your masks, wash your hands, social distance, but please also stay connected and hopeful. We promise to do the same, and to continue champion science, because science is what’s going to save us.

Thank you so much for listening to today’s episode. If you’re enjoying This is Growing Old, we encourage you to subscribe and rate us on Apple Podcasts, Spotify, Google Podcasts, or anywhere else you listen to podcasts. Thank you, and have a great day.