Legislative Advocacy Training: Activity 4

Legislative Advocacy Training Activity 4
The HAEA Youth Advocacy Program encourages young people to be active players in shaping the perspectives of elected representatives in both the House and Senate. By participating in HAEA Youth Advocacy initiatives, we can amplify our collective voices to ensure that issues important to HAE patients are heard in the states and federal governments.

Use this form to document and save and submit your answers for the activities. You will receive an email with all your answers when you submit the form.

Note: Some of the legislative advocacy training activities may require discussion with your family members. Feel free to reach out to a family member to provide additional insight if you are unsure about how some of the issues impact your family.
I understand that my responses, testimonials, and images may be stored, used, processed, published, distributed, and otherwise disclosed for HAEA’s internal purposes or for educational purposes.
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Relating to the Issues: Activity 4
Now that you have learned about some of the pressing issues facing the HAE community, it’s important to think about why these issues are important and how they relate to you and your experiences. This exercise will ask you to think critically about your personal experiences and the issues you learned about last week.

Some helpful links:

To learn more about PSI and the Assistance Fund, visit their websites:

PSI: https://www.patientservicesinc.org/
The Assistance Fund: https://tafcares.org/patients/
United for Charitable Assistance
Do you or your family use charitable assistance programs like PSI or the Assistance Fund to help pay for medical expenses? (If you aren’t sure about the answer to this, ask a family member who would be able to help.)
If the answer to the previous question was yes, find out what services you use from these programs. Do you use premium assistance? Copay assistance? Travel assistance? Ancillary support (additional funds to help pay towards your deductible and other health care bills)? What services do you or your family use?
If the answer to the first question was no, has your family used these services in the past?
If you or someone you know uses these services to help cover the cost of health care, think critically about the value that these services have for you and your family. Why is this service important for people with rare chronic health conditions? If you don’t know the answers to this question, ask a family member who is more involved in your family’s health care management to assist.
Safe Step Act
Think about your experiences finding a medication that works well for you. Did you ever receive an insurance denial for your medications?
If you have ever been denied insurance coverage for a medication, do you know why you were denied? Why?
Have you been forced to try and fail on a medication that wasn’t your first choice? If yes, what was this experience like?
If you haven’t been denied access to medication, write about why it was so important for you and your physician to come up with a plan that works well for you. How has this successful plan impacted your life?
National Institute of Health Rare Disease Funding
How has your life been impacted by advancements in HAE research?
Should be Empty:

Legislative Advocacy Training Activity 4

Relating to the Issues: Activity 4

United for Charitable Assistance

Safe Step Act

National Institute of Health Rare Disease Funding