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VF's Vasculitis Patient & Care Partner Insights Survey (Anonymous)

The pharmaceutical companies on our Corporate Council are actively involved in vasculitis research, developing treatments, and supporting the Vasculitis Foundation's programs. Your responses will help these companies better understand the real-world experiences, challenges, and needs of people living with vasculitis. Results will be presented in aggregate form, and no personally identifying information will be shared.

Your voice is essential in shaping the future of vasculitis research and treatment. Thank you for taking the time to share your experiences and insights.
1.What specific insights would you like pharmaceutical companies to understand about the patient experience?
2.What questions would you like to ask pharmaceutical about their research, drug development process or patient support programs?
3.How have the VF's programs and initiatives supported by corporate partners impacted your vasculitis journey? (e.g. Education, Webinars, Conferences)
4.Which of the following public policy initiatives are you familiar with?
Never heard of it
Heard of it, but don't know much more than that
Heard of it and have some knowledge
Very knowledgeable
ORPHAN Cures Act:
Ensures that drugs used to treat one or more rare diseases will not be subject to government price setting under the Inflation Reduction Act and clarify the timeline used to determine when an orphan drug may become eligible for negotiation, further incentivizing the innovation of necessary rare disease treatment.
340B Reform:
Requires pharmaceutical manufacturers participating in Medicaid to sell outpatient drugs at discounted prices to health care organizations that care for many uninsured and low-income patients.
The Pharmacy Benefit Manager (PBM) Reform Act:
Establishes requirements for PBMs regarding services provided to health insurance plans. Includes PBM Transparency to Plan Sponsors, a cost-sharing cap for highly rebatable drugs, and a spread pricing ban.
5.Which public policy initiatives would you be interested in learning more about through VF education (webinars, materials, website, etc.)?
6.Has vasculitis care and/or treatment created financial hardship for you or your loved one?
7.Do you live in a rural or urban area, and approximately how far do you travel (one-way) for your vasculitis care?
8.What aspects of living with vasculitis do you feel pharmaceutical companies may not fully understand?
9.On a scale of 1-5, how satisfied are you with current treatment options for your type of vasculitis? (1 = Very dissatisfied, 5 = Very satisfied)
Very dissatisfied
Satisfied
Very satisfied
10.What side effects from current treatments have the most significant impact on your quality of life?
11.What improvements to existing treatments would make the biggest difference in your daily life?
12.How do you prefer to receive information about new treatments or clinical trials?
13.What support services from pharmaceutical companies would be most valuable to you?
14.How would you rate the coordination between your different healthcare providers for vasculitis care?
Very poor
Not good
Neither Good nor Bad
Good
Excellent
15.What information would help you make more informed decisions about your treatment options?
16.What is your biggest unmet need as someone living with vasculitis?
17.Have you participated in a clinical trial for vasculitis?
18.How old are you?
19.How long have you or your loved one been living with vasculitis?
20.What form of vasculitis to you or your loved one have?
21.Is there anything else you want to make sure the Vasculitis Foundation knows? (i.e. general feedback, ideas for additional resources, ways we could improve, things we do well, etc.)
Thank you for taking the time to share your experiences and insights with us. The Vasculitis Foundation and our Corporate Council partners are committed to using this feedback to improve care and outcomes for the entire vasculitis community. Your voice matters, and together, we are making progress toward better treatments and ultimately, a cure. We deeply appreciate your contribution to this important effort.
THANK YOU!