As all of us who have had Cushing’s or have cared for someone with Cushing’s know, one of the most difficult parts of coping with the disease is the lack of awareness and understanding that those around us seem to have. At CSRF we are always looking for opportunities to change that.
On April 16th, 2013, CSRF Director Emily Acland (who you may have met in Boston at our Patient Education Day!) joined representatives from Novartis and the Pituitary Network Association for an expert panel at the Congressional Rare Disease Caucus Briefing on Capitol Hill. The briefing, which was hosted by Congressmen Leonard Lance (R-NJ) and Joe Crowley (D-NY), who are members of the Congressional Committee on Rare Diseases, focused specifically on rare pituitary disorders, like Cushing’s, and the unmet needs of patients with this special subset of diseases.
Attendees were especially interested to hear about the emotional and neurological symptoms of Cushing’s; symptoms that often make it so difficult for patients to continue working or to go back to work even long after surgery. Emily emphasized the struggles that Cushing’s patients face both when trying to get a diagnosis and during and after treatment when applying for disability insurance due to the lack of awareness that exists surrounding our disease. The room was shocked to hear that the average time that most patients struggle before finally receiving a diagnosis is close to a decade and that not one of CSRF’s members has reported a return to 100 percent of their pre-Cushing’s health even after successful treatment – facts that members of our community are all too familiar with.
Most importantly, the panel introduced a House of Representatives Resolution that we hope will help us make major strides in public awareness surrounding Cushing’s. The Resolution (H.Con.Res.31) asks that Congress support a nationwide Rare Pituitary Disease Awareness Day which will recognize the importance of improving awareness and encouraging accurate and early diagnosis of Cushing’s disease and other rare pituitary diseases. The Resolution also supports a substantial national commitment to improving diagnostics and cures for rare pituitary diseases and quality of life for patients afflicted by these rare conditions.
Additional rare disease briefings will be held in the coming months to educate our legislators about Cushing’s disease and CSRF will be front and center. We constantly strive to ensure that our voices are heard and that our challenges are recognized and understood. In the meantime, we encourage you to contact your local representatives to urge them to support H.Con.Res.31!