Patricia Weltin: Don’t abandon those with rare diseases
Providence Journal – March 26, 2013 11:49 am
More than 30 million Americans in this country live with a rare disease–about 100,000 right here in Rhode Island. My daughter, Olivia, is one of them.
Olivia was diagnosed with Hypermelanosis of Ito when she was three. It took about a year to get the correct diagnosis. She is one of only 100 people in the U.S. reported to have the disease. And, unfortunately, only 5 percent of all rare diseases have a treatment, which means for Olivia, there is no cure…yet.
In March 2011, Olivia underwent spinal cord surgery to untether her spinal cord. As I sat by her bed I contemplated the many issues facing the rare disease community. That’s when I decided to form the Rhode Island Rare Disease Foundation to benefit Rhode Islanders living with a rare disease.
What I’ve learned since founding this organization is that while each of the diseases our members face may be different, the challenges faced by the rare disease community remain the same: inaccurate diagnosis, no diagnosis, lack of awareness, a sense of isolation and insurance and reimbursement issues. Because of these insurance and reimbursement issues, access to the medication they need to manage their conditions can be a huge hurdle in their care. Treatments for rare conditions often require the use of medications classified as “specialty” or “orphan” medications.
Specialty-tier cost-shifting frequently limits access to these products. More and more health plans are transferring the increased cost of prescription drugs on to patients in the form of cost-sharing arrangements, such as higher premiums, co-payments, deductibles or co-insurance.
For those with rare, genetic and chronic diseases, there is often no other alternative. There are no options available for patients to switch to generic drugs since most prescription medications on specialty tier lists are biologics and have no generic alternatives.
For patients this can lead to making decisions between being able to afford a medication that provides them with their health and a better quality of life. With no assistance, these drugs can cost thousands of dollars. These are patients with insurance, paying their monthly premiums, but yet, when they need medication-cost assistance, they are left to foot a majority of the bill.
Patients living with rare, serious, or chronic conditions are being disproportionately impacted by this shift in cost sharing. The practice is unfair and discriminatory and needs to be curbed so that those fighting rare diseases have a chance to correctly manage their medical conditions–not based on finances, but on the sound advice of their doctors.
That is why we, at the Rhode Island Rare Disease Foundation support such legislation as H. 5591/S. 754, which would limit the out-of-pocket costs for patients facing crippling insurance bills for often life-saving medications. We ask our local lawmakers to help to pass this bill into law, giving families like ours the ability to fight disease without fighting our finances. The writer is Executive Director of the Rhode Island Rare Disease Foundation.