Mr. Trump, I’m writing this in the wake of the Republican National Convention. I was so excited to see your son Eric acknowledge the special needs community. See, before I ever became “Rare Candace”, I was the sister to an incredible young man with autism and cerebral palsy. Growing up, I was his sister, his protector and his best friend. One day, I will be his caretaker all while managing my rare disease and three additional chronic conditions.
I am not looking for sympathy or money, I believe I have been blessed with a second chance that few others in my position will ever have. I am about six weeks away from my 30th birthday, a day I am not suppose to see because my rare disease almost stole it from me.
In the two years I have been sick, I have become a voice for the members of society hidden away from plain view. I am a voice for the caretakers, the siblings. The people in hospitals and at home fighting for a “new normal” with illness. I have been working with members of Congress in both parties to pass legislation that will help the largest minority in America- people with disabilities.
My rare disease does not define me, just as my brother’s conditions do not define him. He graduated with a degree from Florida Atlantic University, despite my parents being told he would never walk or talk. I was hospitalized with a platelet count so low, when I hit my head on a 26 foot box truck at work the day before, I should have bled to death. We both have defied the odds. Your children spoke to us, as did you. So I am reaching out.
I know we can do better for America. I know our orphan drug approval process is overcomplicated and leaves people to die from awful diseases while we approve other drugs that carry little benefit to the American public. I am the victim of Obamacare, which I have to pay through my law school loans, yet covers little while I manage my health. We can fix this, and I know you can help.
Mr. Trump, over 30 million Americans have a rare disease. Factor in caregivers and families members, that number grows to well above 100 million. We need your help to change the way this country assists people like me and people like my brother. I see the things that need to be changed, things that can be improved, and in your speech you touched on many of them.
I would like to talk to you about how we can work towards Making America Great Again by increasing funding for medical research, reforming the FDA and encouraging biotechnology and pharmaceutical companies to create new treatments and potential cures for the over 7,000 known rare diseases. Currently, only 5% of those disease have an FDA approved treatment. America can do better, and with you we can reach new heights.
Candace H. Lerman