KIF1A US Health Policy Questions

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KIF1A is working on developing policy positions and priorities to help expand access to KIF1A treatments, testing, and other healthcare resources beneficial to the KIF1A community. Ashira Vantrees, sister to Athena Vantrees (KIF1A warrior), has been working on these issues, and works as Legal Counsel at Aimed Alliance, a national health policy organization.

If you have questions about anything in the below survey please email Ashira at ashira.s.vantrees@gmail.com

Email *

Name

What US State are you located in?

What type of insurance do you have?

Private Insurance

Public Insurance

Both

Uninsured

Other

Clear selection

What are your barriers in accessing insurance coverage?

What issues would you like to see KIF1A engaged in?

Expanding Access to Diagnostic Testing

Addressing current barriers to access non-KIF1A specific treatments -- accessing treatments for symptoms of KIF1A (ex. epilepsy). This could include step-therapy; prior authorization; etc.

Expanding Access to Clinical Trials/Resources to Develop KIF1A Specific Treatment

Other:

Step therapy is when your doctor prescribes a medication, but your health insurance plan says you must try another treatment first instead of the treatment your doctor prescribed.

I have heard of, and been, impacted by step-therapy.

Yes

Clear selection

Prior authorization is when you insurer requires your doctor to justify a specific treatment before it will cover the medication.

I have heard of, and been, impacted by prior authorization.

Yes

Clear selection

I want to engage in KIF1A related policy issues?

Yes

Other:

Clear selection

I have the following to engage on KIF1A Policy Issues

I can send an email

Attend an event in my state

Attend an event in DC

Other:

I need information on:

What is Step Therapy?

How to appeal a health insurance denial

How to apply for state medicaid programs

What is Prior Authorization?

Drug development process (small molecule v. gene therapy)

What is Biomarker testing?

What are copay accumulators?

Americans with Disabilities Act

Family Medical Leave Act

What other issues that impact your family's daily life with KIF1A would you like to see the organization work on?

Any other comments

Submit

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