Your alopecia areata experiences as a patient or parent matter.
The FDA is required to acknowledge that too, so we have been clarifying the FDA's role. In the Fall of 2014 when the FDA chose to ask for AA patient input, we stepped up to the plate wearing our favorite AA advocate hat.
- We explained and you responded. Our network rocks!
- Then, we assembled a compelling submission of your verbatim comments in support of AA as a session topic for the PDUFA-V (Prescription Drug User Fee Act) renewal that requires patient-focused workshops. (open the PDF at the bottom of the comments page)
- AA is just one of many diseases that might be selected for additional patient input. Time will tell.
Our deepest thanks for the honest feedback of our participants and those who sumitted on their own.
On facebook a friend of Bald Girls Do Lunch said "These are very powerful" and we couldn't agree more!
Our document is public at Regulations.gov. We hope you will have a look and share the link.
Here's a sample of what our subscribers said:
- I have alopecia universalis and it affects me every day in so many ways.
- I no longer engage in activities and social events that I used to because i feel embarrassed about my appearance.
- I miss my old life and am constantly trying to figure out how to conceal my hair loss....that being said, I would not take a medication that would pose a risk to my health
- It's a devasting diagnosis, especially for women. We need help to find a viable living situation.
- My child is in a world where unfamiliar adults assume that she is sick and unfamiliar children are very cruel.
- The treatments that are available have not worked at all for me.
We will continue to follow updates for renewal of the PDUFA-V and alert you when the diseases that are chosen for session workshops in FY2016-17 are announced.