Spring 2021 COVID Impact Survey

I am responding to this survey as*

someone with an Inherited Metabolic Disorder (IMD)
the caregiver of someone with an Inherited Metabolic Disorder (IMD)
all of the above

What state/territory do you live in?*

How many people in your household have an IMD*

What are the diagnos(es) of the people with IMD in your household?*

Select all that apply

Other IMD:*

What age groups do the people with IMD in your household fall into?*

Select all that apply

The next few questions ask you to compare your insurance from before the pandemic (as of February 2020) and now (April 2021 and on)

Type of insurance in February 2020*

Type of insurance as of April 2021*

If private, was your plan self-insured as of February 2020?*

Self-insured describes a situation in which your employer actually pays all healthcare costs, but your plan is still administered by an insurance company. Most common for companies with more than 100 employees.

If private, was your plan self-insured as of March 2021?*

Self-insured describes a situation in which your employer actually pays all healthcare costs, but your plan is still administered by an insurance company. Most common for companies with more than 100 employees.

Did your insurance cover medical formula for your IMD as of February 2020?*

Does your insurance cover medical formula for your IMD as of April 2021?*

Did your insurance cover low-protein medical foods for your IMD as of February 2020?*

Does your insurance cover low-protein medical foods for your IMD as of April 2021?*

Did any of the following occur between March 2020 and today?

Lost my job due to COVID-related cutbacks/closure
Had my hours/pay reduced due to COVID-related cutbacks/closure
Had to take time off (paid or unpaid) or change or leave a job to avoid potential exposure to COVID
Had to take time off (paid or unpaid) to quarantine due to exposure
Had to take time off (paid or unpaid) to recover from COVID infection
Had to take time off (paid or unpaid) to care for someone infected with or exposed to COVID

If your type of insurance changed, was this change related to/caused by COVID-related employment changes?*

Insurance type didn't change
Yes
No
Partially

If your type of insurance changed did you have any delays or difficulties in obtaining access to formula, or low-protein medical foods, or individiual amino acids after this change?*

Insurance type didn't change
Yes
No

Please explain the nature of the delays or difficulties after your insurance type changed.*

How have things changed?

Did you experience any of the following during the last year (March 2020-March 2021) under the COVID-19 Pandemic?

Delays in obtaining test results

Delays in obtaining test results

Have the test result delays continued or resolved?*

Yes, delays still continue
No, the delays have resolved

Delays in obtaining medical formula, medical foods, or individual amino acids for IMD

Delays in obtaining medical formula, medical foods, or individual amino acids for IMD

Have the formula/food delays continued or resolved?*

Yes, delays still continue
No, the delays have resolved

Delays in obtaining prescription medications to treat IMD

Delays in obtaining prescription medications to treat IMD

Have the Rx delays continued or resolved?*

Yes, delays still continue
No, the delays have resolved

Difficulty in obtaining access to medical professionals (doctors, dietitians etc) for IMD treatment

Difficulty in obtaining access to medical professionals (doctors, dietitians etc) for IMD treatment

Have the clinician access delays continued or resolved?*

Yes, delays still continue
No, the delays have resolved

Delays in starting a new medication or research trial

Delays in starting a new medication or research trial

Have you been able to start this new medication/research trial yet?*

It's still delayed/hasn't started
I've been able to start the new medication/research trial
I decided not to start the medication/research trial

Difficulty in finding low-protein grocery staples

Difficulty in finding low-protein grocery staples

Has the grocery scarcity continued or resolved?*

Yes, LP groceries are still scarce
No, I can find LP groceries again

Switched to telemedicine for IMD care

Switched to telemedicine for IMD care

Are you still using telemedicine for IMD care?*

Yes, still using telemedicine
No, we are visiting the clinic in-person again

Did telemedicine meet your care needs when you were using it? Would you prefer to have the option to continue with telemedicine?*

Lost employment and/or income

Lost employment and/or income

Has your income/employment level returned to pre-pandemic levels?*

No, I'm still working/making less than I was pre-pandemic
Yes, I'm working/making as much as I was before March 2020

Loss of childcare

Loss of childcare

Have you been able to return your child(ren) to childcare?*

No, we still have less care than before
Yes, they are back in sufficient childcare

In general, how does your current situation compare to your pre-pandemic situation?*

Please provide details on any particular hurdles you are facing in obtaining care and/or insurance coverage for treatment for your IMD

General Food Insecurity

These last questions are about your family's GENERAL food insecurity, unrelated to medical nutrition.

In the last 30 days have you experienced any of the following? Please check all that apply. (Again, this is related to your family's general food security, not medical food or formula.)

Been worried your food supply would run out before you had money to buy more
Bought food that didn't last as long as you'd hoped, and didn't have the money to buy more
Been unable to afford to eat balanced, healthy meals

Your email*

Please provide your email address to validate your entry. This will not be published or distributed or in any way publicly affiliated with your responses above.