COVID-19 and the IMD Community Survey PKU News, the National PKU Alliance, HCU Network America, the MSUD Family Support Group, National Organization of Tyrosinemia Advocates (NOTA), the FOD Support Group and the Organic Acidemia Association are looking for information on how the COVID-19 Pandemic and related societal changes are affecting those with inherited metabolic disorders (IMD), particularly regarding access to low-protein medical food and formula. These questions outline some issues we anticipate; feel free to add additional issues in the comments section. We’ll use this information to decide how we can best support the IMD community during this time, and to reinforce the need for the passage of the Medical Nutrition Equity Act. **PLEASE NOTE: Because treatment & insurance varies greatly around the world, this survey is focused on those in the United States and and its territories and limited to respondents from those areas. Thank you!** We have conveyed the following statement regarding the Medical Nutrition Equity Act and IMD to the bill's leadership in Congress. What state/territory do you live in?*AlabamaAlaskaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaOhioOklahomaOregonPennsylvaniaPuerto RicoRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUS Virgin IslandsUtahVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces PacificWhat age groups do the people with IMD in your household fall into?*Select all that applyLess than 22-910-1819-3030-4545-6060+What are the diagnos(es) of the people with IMD in your household?*Select all that applyPKUMSUDTyrosinemiaOrganic AcidemiaHCUFODOther (please note below)Other IMD:* Is your medical FORMULA coverage secured through an employer-provided plan?* Yes No I don't have medical formula coverage I don't require medical formula Is your LOW-PROTEIN MODIFIED FOODS coverage secured through an employer-provided plan?* Yes No I don't have low-protein modified foods coverage I don't require low-protein modified foods If yes, are you at risk of being laid off or furloughed and losing your medical nutrition coverage?* Yes, I’ve already been laid off or furloughed and lost coverage Yes, I’m at risk of being laid off or furloughed and losing coverage No Have you had any of the following issues starting after March 14th, 2020 that may be related to the pandemic? Delays in obtaining approval from clinic for formula, low-protein modified food, or supplements Delays in insurance approval of formula, low-protein modified food, or supplements Delays in processing or shipping of formula, low-protein modified food, or supplements Delays in turnaround time for regularly-scheduled blood tests to monitor levels Difficulty finding low-protein grocery staples Delays or difficulting in obtaining medications to treat IMD Delays in research studies or clinical trials that you were participating in/were preparing to participate in Medication(s) you take that have been delayed or you've faced barriers obtaining* Details on barriers to careIf you checked any of the boxes above, please provide additional details on the delays or barriers you have faced. While we understand that in times of insecurity, you may consider increasing your medical nutrition products to protect you against delays, we urge you NOT to stockpile or request excessive additional formula from your clinic: doing so could cause the very shortages (for you and others) that you’re trying to avoid.How many WEEKS of formula do you have on hand?*N/ALess than 1 week1-2 weeks2-4 weeks4-6 weeks6-8 weeksMore than 8 weeksHow many WEEKS of low-protein modified foods do you have on hand?*N/ALess than 1 week1-2 weeks2-4 weeks4-6 weeks6-8 weeksMore than 8 weeksIf you take a prescription medicine as treatment for your IMD, how many WEEKS of this medicine do you have on hand?*N/ALess than 1 week1-2 weeks2-4 weeks4-6 weeks6-8 weeksMore than 8 weeksIf you take additional dietary supplements as treatment for your IMD, How many weeks of these supplements do you have on hand?*N/ALess than 1 week1-2 weeks2-4 weeks4-6 weeks6-8 weeksMore than 8 weeksAre the above amounts more or less than you usually had on hand (before the Coronavirus)?* More Less About the same Has your clinic changed procedures or modified appointments in any of these ways? Asked that you do blood draws at local centers & send in rather than come into clinic Switched to dry blood spot (DBS) testing from home, rather than in-clinic blood draws Offered telemedicine appointments Have you received guidance from your metabolic clinic specific to your disorder & COVID-19? If yes, please explain.Have you or anyone in your immediate family been diagnosed with COVID-19*Please include only those who live in the same residence with you. Yes No Prefer not to answer Was this diagnosis confirm by laboratory testing?* Yes No I don't know Do you have any specific questions or concerns? Please note we cannot respond to individual requests for support, but are trying to gather information on the needs of the community as a whole.We'd like to follow up with you in three weeks and see if your situation has changed. Please provide your email below so we can send you a follow up survey.Email address The response period for this survey has expired.
