My experience at Rare Disease Week on Capitol Hill was one of the most amazing and fulfilling experiences I have ever had. Advocating for something bigger than myself, on such a powerful scale, was a truly remarkable experience.
During this week, Feb. 25-28, people with a range of rare diseases and their loved ones came to lobby the government for an array of different bills, geared toward making the patients’ lives easier and ensuring equitable treatment in the health community.
A rare disease, as defined by the United States government. is one that has fewer than 200,000 current patients across the nation. Collectively, one in 10 Americans, or roughly 31 million people across the country, have a rare disease – a staggering number for a community so often overlooked and rarely heard. That is why this week arose – to give those Americans a voice.
People who suffer from rare diseases fight uphill battles every day. One of the biggest is the cost of drugs needed to either cure or treat their disease. For most rare diseases, an orphan drug is required, a drug that can only treat one disease. In 2016, the average cost per year for one patient to attain an orphan drug was $140,443.
Rare Disease week is more than simply lobbying the government. It is about raising awareness, which is one thing everyone can do to help make rare disease patients’ lives that much easier. Simply utilizing social media, or even bringing it up in conversation with friends, can go a long way, and is a great stepping stone towards a bigger future of advocacy.