Covid-19 and Medical Nutrition Access 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 a disorder dependent on medical nutrition in your household fall into?*Select all that applyLess than 22-910-1819-3030-4545-6060+Primary Condition Type* Inherited Metabolic Disorder/Inborn Error of Metabolism & Disorders on the RUSP (Including CF) Medical or Surgical Condition of Malabsorption Allergies to food proteins Inflammatory or Immune-mediated Condition of the Alimentary Tract Other Inherited Metabolic Disorder/RUSP Disorders* 3-Hydroxy-3-methyglutaric aciduria3-Methylcrotonyl-CoA carboxylase deficiencyArgininosuccinic aciduriaBiotinidase deficiencyCarbamoyl phosphate synthestase deficiencyCarnitine uptake defect/carnitine transport defectCitrullinemiaCystic FibrosisGlutaric acidemiaHolocarboxylase synthase deficiencyHomocystinuriaInherited disorders of mitochondrial functioningIsovaleric acidemiaLong-chain L-3 hydroxyacyl-CoA dehydrogenase deficiencyMaple syrup urine disease (MSUD)Medium-chain acyl-CoA dehydrogenase deficiencyMethylmalonic acidemia (cobalamin disorders)Methylmalonic acidemia (methylmalonyl-CoA mutase)N-acetyl glutamate synthase deficiencyOrnithine transcarbamlyase deficiencyPhenylketonuria (PKU)Propionic acidemiaTrifunctional protein deficiencyTyrosinemiaVery long-chain acyl-CoA dehydrogenase deficiencyOther Amino Acid DisorderOther Fatty Acid Oxidation DisorderOther Organic Acid ConditionOther Inborn Error of MetabolismMedical or Surgical Condition of Malabsorption* Short Bowel Syndrome (SBS)Chronic Intestinal Pseudo-obstructionMalabsorption due to liver or pancreatic diseaseOtherAllergies to Food Proteins* Eosinophilic colitisEosinophilic esophagitisEosinophilic gastroenteritisFood protein-induced enterocolitis syndromeImmunoglobulin E-mediated allergies to food proteinsNon-Immunoglobulin E-mediated allergies to food proteinsPost-transplant eosinophilic disordersOtherInflammatory or Immune-mediated Condition of the Alimentary Tract* Crohn’s diseaseGastroesophageal reflux diseaseIndeterminate colitisInflammatory bowel diseaseUlcerative colitisOtherEnter the full name(s) of your condition(s)* 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 beginning March 14th, 2020 that are or may be related to the pandemic? Difficulty affording medical nutrition due to loss of employment, lost wages, or salary reduction 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 in research studies or clinical trials that you were participating in/were preparing to participate in Details on barriers to careIf you checked any of the boxes above, please provide additional details on the delays or barriers you have faced. Currently, all indications are that there are no supply-chain issues related to formula and/or other medical nutrition products and that patients have been able to obtain what they need. If you have experienced some type of delay related to the pandemic, please tell us about it in the space below. Please note that PPMNE strongly discourages patients from stockpiling medical nutrition formula and products as this could cause the very shortages we are trying to avoid for you and for others. Please let us know if you have been unable to obtain your usual (pre-COVID-19) quantities of the following: Medical Nutrition - Formula Medical Nutrition - Low-Protein Modified Foods Medical Nutrition - Vitamins or Supplements If you checked any of the above, please tell us more about the issueHas 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 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 confirmed by laboratory testing?* Yes No Don't Know Is there anything else we should know about how the COVID-19 pandemic is impacting your ability to treat/manage your medical nutrition?We'd like to follow up with you in a few weeks to see if your situation has changed. Please provide your email below so we can send you a follow up survey.Your email address Δ
