Connect Issues Winter 2022

What do I do if there's a recall on my ARB/beta blocker, or a shortage? Vital Medical Information

It is the opinion of the Foundation’s Professional Advisory Board that the risk posed by the impurities is much smaller than the risk of stopping the medication for people in our community. Recalls can also lead to temporary shortages of medications essential to those with Marfan, Loeys-Dietz, VEDS, and other genetic aortopathies. The Professional Advisory Board urges people to discuss options with their healthcare providers to safely transition to alternative suppliers of your current medication or to an alternative medication, if necessary. If a transition from irbesartan to losartan is necessary because of shortages or recalls, it is important to speak with your doctor regarding dose adjustment because the medications have di ff erent potencies. In general, you should expect to receive a higher dose of irbesartan. A change between medications in the same class (such as the angiotensin receptor blockers losartan and irbesartan) is generally done without weaning or a titrated transition. If you have further questions, please contact our Help & Resource Center (Marfan.org/ask) or ask your healthcare provider.

Over the past several years, there have been numerous recalls or shortages in the medications commonly used by people with Marfan, Loeys-Dietz, and other related conditions. Many of the impurities are probable human carcinogens (a substance that could cause cancer), which would only present a concern with high exposure over an extended period of time. Additionally, many of these impurities are found during the manufacturing process and not the final product. In most instances, the FDA does not mandate a recall; rather, the company decides on a recall to err on the side of caution. The FDA then posts a company's recall announcement as a public service. When a drug retailer is notified of any batches that warrant concern, your pharmacist is a valuable resource for information about your current batch of medication. The pharmacist can also provide access to a medication from an alternative supplier. These types of issues arise intermittently for many types of medications including various angiotensin re- ceptor blockers, such as irbesartan or losartan, and beta blockers, such as metoprolol or atenolol. The situation is always carefully monitored, and the response by regula- tors and retailers is typically prompt and decisive. UPDATE Camp VICTORY Camp Victory for Kids and Camp Victory for Families are vital programs for our community. These sleepaway camps, which are specifically for kids and families with Marfan, LDS, VEDS, and related conditions, provide the same fun and friendships as all summer camps. The only di ff erence is that Camp Victory o ff ers an adaptive environment that is safe for them, given physical limitations due to their diagnosis. We were so looking forward to re-starting Camp Victory for Families in Ohio and Georgia in April. However, due to the recent COVID-19 resurgence, we decided to postpone these camps. The health and safety of our families is always our first priority. We continue to plan for Camp Victory for Families in Northern California, June 24-26, 2022. Then we have three Camp Victories for Kids planned for this summer. u Georgia: July 23-29, 2022* u Northern California: August 1-6, 2022 u Ohio: August 7-12, 2022

p Campers at our Atlanta area camp (pre-pandemic) enjoyed the regular camp activities.

Please know that, for all camps, we will follow strict COVID protocols. Camps are subject to change pending pandemic status and local, state, and federal regulations. Please watch for updates and registration announcements on the Foundation website. If you have any questions about Camp Victory, please contact Andrea Friedman, MSW, Client Services Manager, at afriedman@marfan.org.

*to be confirmed

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