Caring Voices

It is the new year and I have been approved for a grant again from the Caring Voice Coalition to help cover my costs for Letaris, a drug that costs $60,000 per year. The Caring Voice Coalition is a non-profit, charitable organization, established in 2003. It serves the needs of individuals affected by serious, chronic disorders by providing financial assistance, insurance education and counseling and patient support. They assist patients improve their quality of life. They currently serve patients diagnosed with Alpaha-1 antitrypsin deficiency, chronic granulomatous disorder, huntington’s disease, idiopathic pulmonary fibrosis and pulmonary arterial hypertension.
I am so grateful that Caring Voice has helped me and others. They are so caring and kind when I talk with them. Until recently, the diagnosis of pulmonary arterial hypertension in a patient with scleroderma was the most sure death sentence in all of rheumatology. New drugs on the market such as Letaris have extended the lives of those patients, but the costs are high. I would not be able to take Letaris because I wouldn’t be able to afford my co-payment for it if it weren’t for Caring Voices. The Caring Voice Coalition accepts financial contributions from both the public and private sector to assist patients with severe, chronic conditions. Anyone may support the Caring Voice Coalition, including state or federal foundations, individuals, and private or public corporations.
My medical records show that I have systemic sclerosis (scleroderma), gerd, fibromyalgia, or myosistis, hyperlipidemia, hypothyroidism, sjogren’s, raynaud’s, cervical spine disc disease, pulmonary fibrosis, pulmonary arterial hypertension, avascular necrosis, and glaucoma. I take several medications to control my symptoms and I incur the cost of the meds as well as visits to the Doctors each month and for labs and tests. With my medical history, I am so grateful that Caring Voices sees me fit to help with a grant for Letaris. With our economy as bad as it is, we have to put our dollars to good use. If you are able to donate to a charity this year, Caring Voices would be a wonderful group to consider. It is groups like Caring Voices who give us hope for a better tomorrow.