Dealing With The Expensive Shock Of A Rare Disease
Access to Medication A recent CORD survey found that the median time to have a rare disease diagnosed is three to 6 years.
If you are lucky enough to have a treatment for your condition, you may find yourself in sticker shock. Prescription drugs for rare diseases can cost in excess of hundreds of thousands of dollars or more per patient per year. In the same survey, over 70 percent of the patients indicated they had to incur personal costs for their treatment.
“When a patient gets diagnosed with a rare or orphan disease they don’t understand all the hoops you have to jump through to access these drugs,” said Sandra Anderson, a VP of Consulting and Business Development at Innomar Strategies which designs and operates Patient Support Programs.
Patients cannot simply go to the pharmacy to pick up a $100,000 drug, because they don’t keep them on the shelf.
Pharmaceutical companies offer ‘Patient Support Programs’ that help patients navigate through accessing coverage and reimbursement from private insurers and public health programs, and provide many different types of logistics and education support along the way. ‘Patient Support Programs’ help patients ensure that they can get on the needed medication as quickly as possible.
When a patient, or their child, is prescribed a specialty drug for a rare disease, their doctor will typically connect them to that drug’s ‘Patient Support Program’, starting with a phone number, fax or online registration.
“When a patient gets diagnosed with a rare or orphan disease they don’t understand all the hoops you have to jump through to access these drugs.”
When a drug costs hundreds of thousand dollars yearly, even the deductible can be prohibitive. With the lack of funding and intensive review process for these drugs, patients cannot always wait to get these drugs funded by the payers. The ‘Patient Support Program’ provider can help patients with the paperwork, authorization forms and the back-and-forth between insurers, public coverage and their physicians. In many cases they also seek financial assistance from the manufacturer which can offset the deductible that patients may be required to pay.
If you move, change or lose your job, ‘Patient Support Programs’ can pave the way with your new insurers, and try to ensure you have ongoing and uninterrupted access to your therapy, for example, if you need to find a clinic near your new home to administer your treatment.
Nurse and dietician support
These programs can offer infusion or injection services when required, and also dietician and nurse support to educate patients on how to follow the regimen of your therapy. They also support patients with the difficulties and challenges of living with a rare disease.
Every program is different, customized to the drug, and the needs of the patient and their families. The programs also support the already established support network of physicians and clinics in the community and act as a partner to the limited support in place in the community. This is critical given that only 40 percent of the patients in the CORD survey felt they received enough information at their initial diagnosis.
Being diagnosed with a rare disease is often a shock in itself, and navigating through the system and facing the possibility of having to pay for the one drug that can help you can be overwhelming. Pharmaceutical manufacturers invest in ‘Patient Support Programs’ to ensure patients can get access to the medications quickly, affordably and are supported with the right information to help ease their journey.