Michelle A. DeBerry's Story

Location: California
Conditions:  Rheumatoid Arthritis (RA)
Insurance Company:  Health Savings Account (HSA)
Doctors: Rheumatologist and primary physician
Medication Prescribed: Enbrel
Access to care issue: Extremely high ($ 2,000) insurance deductible and subsequently, only 80% of the total prescription cost is covered.

How is your relationship with your doctor?
Awesome – my rheumatologist is the best! I send him an email whenever I have a question, and he makes it a point to respond to my inquiries promptly. When I had decided to participate in the marathon last year, I asked him for permission to run over email. I see my rheumatologist every six months, and I am planning to fly back to New York from California soon to see him.

How does RA affect your lifestyle?
When I am on my medication, I sometimes even forget that I have RA. I live a normal life and am not hindered by my condition. I have been a runner my whole life, and last year I participated in the NYC marathon. In order to achieve this, I had to tweak my diet and make other healthy lifestyle changes. I felt great, but during a three month period I was between insurance, I went without my medication and had a relapse. After just two months without Enbrel, my symptoms started again, and it was a huge reminder of what my life was like before I started treatment. My situation got so bad, that I had to cling onto the railing every time I walked down the full set of stairs of my apartment. My feet hurt so badly, it felt as if I were walking directly on the bone. The pain was horrible.

Tell us about your insurance.
I changed jobs in early 2011 and moved across the country, from New York City to Los Angeles. My health insurance company in New York was CIGNA, but when moved to Los Angeles, the insurance I was provided through my company was a Health Savings Account (HSA). This HSA had a deductible of $2,000 and subsequently, they would still only pay for 80 percent of the medication. A medication like Enbrel costs $1,900 a month. That would mean I would have to pay almost $400 a month to treat my RA. I reached out to my rheumatologist and Seth Ginsberg, President of the Global Healthy Living Foundation, for assistance. Seth guided me to an Amgen Patient Assistance program, who were able to put me on an assistance program that granted me with six months of free medication, and after that, I only had to pay $10 a month. I was literally crying on the phone when the woman on the other end of the line said that she could help me.

What would you tell your insurance company if you could right now?
There has to be a better way to access the medication for people like me who are in desperate need. It will cost them more in the long run if they do not provide me with the preventative medication I need. A degenerative disease like RA causes major irreversible damage and joint deterioration. As a certified health coach, I believe that insurance companies need to get involved in learning about all aspects of being healthy so that they can better educate the people they insure. Educating the insurance companies about health, diet and physical exercise or just staying active is a missing link that will benefit everyone involved. If they educate their patients and work with them to get the medication they need on top of learning to have a healthy lifestyle, it’s a win-win situation for everyone.

What would you say to the legislators and people in power who can change the way insurance companies are treating chronic patients now?
I would also like them to be educated on the health aspect such as keeping a healthy diet. Times have changed, but the same legislative policies are being passed. Lawmakers do not live with RA, they have their own issues. They really need some way to experience a day in the life of people with chronic diseases to really be able to see how bad it was to people like me who have to go without medications like Enbrel.

What would you say to other people fighting the same struggle?
Reach out to someone. When I was having an issue I reached out to my rheumatologist and Seth. I wanted to help, voice my opinion and give back. I wanted to educate others about additional changes I made in order to live a normal life and even participate in the NYC marathon. Other people who are going through the same situation should be willing to let themselves be heard. They also should not give up, there has to be a better way. I finally was able to find a program that would help me pay for Enbrel.