Aside from managing the medical issues associated with MS, many people living with the disease face financial and health insurance related challenges. That is why affordable and accessible health care is so critical to those facing chronic diseases like MS. Read some of their stories and learn more about becoming an MS activist.
Living in Texas
Diagnosed with MS in 2004
In May of 2003 I was the VP of a nationwide mortgage company, a job I loved. I woke up in the middle of the night with pins and needles in my legs, and within a short period of time I was paralyzed from the ribs down. It took a year of rehab before I could walk again. I couldn’t go back to work. It took two years for me to receive my diagnosis of MS.
Because of my job, I had money I could use to pay for medical care without going into bankruptcy, but I’ve spent every bit of my savings. MS is unpredictable and I never know what’s going to disappear next.
Medical costs are a constant consideration. Doctor visits, lab work, wheelchair repairs, drug co pays--it adds up so fast. Recently, I haven’t been able to take my MS drugs because I can’t pay for them. I was getting them through a patient assistance program, but it ran out of funds. I’ve applied and been accepted to another program so I hope to have my prescription again soon.
One thing that I have learned is that it takes a lot of time and energy to apply to the programs and to navigate the maze of insurance policies and procedures. This can be very difficult for someone who is ill. Also, there are constant trade-offs due to cost. You have to ask yourself questions like “which is more important this week-- my drugs or physical therapy?” and then pick the one that you have the money to pay for.
My Society chapter provides critical information and emotional support– but people with chronic disease like MS need more. Please join the MS activists in supporting accessible, affordable health care for all.
Living in Texas
Diagnosed with MS in 2005
Insurance and medical expenses have been the biggest challenges as I deal with MS, and they are ongoing. Over the years I’ve had insurance through various sources: my job, COBRA, a patient assistance program. I was recently approved for Medicare and have some coverage through my job, so I also have to figure out how those work, what’s covered and what’s my responsibility. I haven’t taken any MS disease modifying drugs for the past few months because of the cost, and I hope to get that remedied. I’ll need help figuring it all out. The MS Navigator at my Society chapter has helped me – but we people with MS need more. Please join the MS activists in supporting accessible, affordable health care for all.
Living in Colorado
Diagnosed with MS in 2008
The ACA affects me in a couple of ways, but the most significant is that I now can’t be denied health insurance due to my MS. I'm 24 years old and in grad school, but thankfully still on my parents’ excellent health insurance. When I was diagnosed with MS a few months before my college graduation, I learned that I would need to have continuous health insurance to avoid being denied coverage in the future for a pre-existing condition. Luckily, I started grad school the semester after graduating and my insurance allowed me uninterrupted coverage. As a result, I was able to begin and stay on medications that would have otherwise been cost prohibitive. I know several people who went without for a few months as they searched for jobs that offered health insurance as a benefit, something that would have been impossible for me. By allowing children to stay on their parent’s medical insurance until they turn 26, this problem is largely alleviated for new college graduates.
I'm recently engaged and now have to figure out how to make the transition to my fiancé’s health insurance. We’ve had to consider this when choosing our date and I have to think about health insurance as well as what flowers, food or music I want at our wedding. Thankfully, the ACA should make this transition at least a little bit easier.
I am also able to get an annual physical (previously this was denied for people over 18 on my plan). Now, I can develop a relationship with a primary care doctor which I currently don't have. Given that I have MS, I feel that I should have someone that manages and coordinates my entire health care and not just my MS related care.