PDAB Survey: Patients & Caregivers

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The Prescription Drug Affordability Board (PDAB) is seeking input from patients and caregivers affected by a condition or disease that is being treated by one of the following prescription drugs:

Enbrel
Genvoya
Cosentyx
Stelara
Trikafta

This survey should take 10-15 minutes to complete. It is divided into three sections: Personal Information, Health Effects of the Prescription Drug, and Financial Effects of the Prescription Drug.

The PDAB will use the information you provide as part of the affordability review process to determine if a prescription drug is unaffordable for Colorado consumers. Surveys should be completed by October 12.

Personal Information

Name *

Email address *

Have you attended, or do you plan to attend, a public input session for patients and caregivers? *

Yes

After you complete this survey, Board staff may have follow up questions for you. Do you consent to staff reaching out to you via email after you complete this survey?

Yes

Clear selection

I am responding to this survey as: *

A patient living with a condition which is currently or formerly being treated by Enbrel, Genvoya, Cosentyx, Stelara, or Trikafta.

A caregiver for someone living with a condition which is currently or formerly being treated by Enbrel, Genvoya, Cosentyx, Stelara, or Trikafta.

Required

If you are a patient, please answer this survey based on your personal experience.

If you are a caregiver, please answer the survey based on the experience of the person for whom you are caring.

Which prescription drug are (you/the person you are caring for) taking currently or previously? *

Are you a Colorado resident? *

Yes

Zip code

If you have health insurance, what type of health insurance do you have? *

I do not have health insurance

Insured through employer

Individual (private) insurance

Medicare

Medicaid/Health First Colorado

Unsure

Other:

The following question is optional, but answers to these questions are important for the Board to understand who these prescription drugs impact and how to consider different populations who use the drug in the state.

I am a member of one of the following priority populations. Select all that apply.

People experiencing homelessness

People involved in the criminal justice system

Black people, indigenous people, and people of color

American Indians and Alaska natives

Veteran

People who are lesbian, gay, bisexual, transgender, queer, or questioning

People of disproportionately affected sexual orientations, gender identities, or sex assigned at birth

People who have AIDs or HIV

Older adults

Children and families

People with disabilities

Health Effects of the Prescription Drug

These questions are intended to understand your day-to-day experiences living with your condition and being treated by the prescription drug.

What condition does this drug treat for you?

How does the condition affect your daily life, or the life of person you are caring for? (Consider mobility, self care, usual activities like work, study, housework, family, leisure activities, pain/discomfort, any anxiety/depression).

What health outcomes are most important to you when being treated for your condition?

What beneficial health effects have you experienced from using this prescription drug, if any?

What adverse health effects have you experienced from using this prescription drug, if any?

What factors led you to the prescription drug you are currently taking? Select all that apply:

It's the only one designated for my condition.

I cycled through other medications that didn't work before finding this one.

It's the drug my provider prescribed and it works for me.

It was required by my insurance company.

The method of delivery or injection works best for me.

Other:

Have you tried taking other prescription drugs to treat your condition? If so, how many?

None

Yes, one other treatment.

Yes, two other treatments.

Yes, three other treatments.

Yes, more than three other treatments.

Unsure

Clear selection

If you have tried other prescription drugs to treat your condition, what were they? Were there any beneficial or adverse health effects of these other prescription drugs?

Financial Effects of the Prescription Drug

These questions are intended to help understand the financial impact of the condition and prescription drug on the patient and caregiver.

How much do you pay out-of-pocket each month for the prescription drug? By out-of-pocket, we mean after insurance or any patient assistance program used to cover the cost of the medication.

$0-$50 per month

$50 - $100 per month

$100 - $150 per month

$150 - $250 per month

$250 - $500 per month

$500- $1000 per month

More than $1000 per month

Clear selection

Has the cost of this drug ever made it difficult for you to access it?

Yes

Clear selection

Has the cost of this drug ever affected your adherence to it? Select all that apply.

I have skipped doses of the drug in order to save money.

I have reduced the dose of the drug in order to save money.

I have stretched time between doses of the drug in order to save money.

I have changed prescription drugs to treat my condition due to cost.

Other:

How does this drug impact you and/or your family? Select all statements that are true for you.

This medication reduces the amount of time and money spent going to the doctor.

This medication reduces the amount of time and money spent going to the hospital or needing surgery.

This medication allows me to work and help support my family.

Due to the cost of this medication, I have had to cut costs in other areas of my life (e.g. housing, groceries, vacations, etc.) to pay for the medication.

Out-of-pocket costs have caused me to accrue medical debt.

The following questions are centered around any financial assistance you may have received to help purchase the prescription drug. Many patients requiring ongoing treatments for chronic diseases receive financial assistance from drug manufacturers and non-profit organizations in the form of copay assistance programs, discount cards, or savings cards. These help patients pay their out-of-pocket costs (such as deductibles, copays, etc.) for their prescription drugs.

Do you/the person you are caring for use, or have ever used, any copay assistance programs, discount cards, or savings that are provided by prescription drug manufacturers, or non-profit organizations to help with out-of-pocket costs (such as deductibles, copays, etc.) for this drug?

Yes

Clear selection

If you replied "yes" to the question above, how did you hear about the financial assistance?

Friend or family member

My provider

My pharmacist

My insurance company

Prescription drug manufacturer

Internet search

Other:

Clear selection

Do you have difficulty affording the drug despite using a patient assistance program?

Yes

Clear selection

If you are insured, please select any of the following statements that are true for you. Select all that apply.

I have chosen to not use my insurance because a patient financial assistance program makes the drug more affordable than my insurance.

My insurance plan has dropped or switched my drug coverage after the plan year started.

My insurance required me to try a medication that I had previously failed, or required me to use a drug that was not recommended by my doctor.

My insurance plan requires prior approval to fill the prescription.

My insurance plan limits my supply of the drug (e.g. only offers a 30 day supply with no 90 day supply option) or number of refills I am able to get.

I worry that the cost of my prescription will raise my insurance premium.

Do you (as patient or caregiver) experience any other financial impacts of the condition and prescription drug (e.g. transportation costs, absence from work, etc.)?

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