Location: Southern New Jersey / Philadelphia area
Conditions: Rheumatoid Arthritis, Fibromyalgia, Hypothyroidism, Sjogrens Syndrome, Scleritis, Cervical Disc Disease, Klippel-feil syndrome and Vasculitis
Disability Insurance: MetLife (long-term disability)
Insurance Company: Aetna (primary insurance company)
Prescription Insurer: Medco (long-term disability)
Doctors: Rheumatologist, primary physician
Access to care issue: Extended wait time during approval process once a biologic stops working
On a daily basis, Tessa has had to learn to cope with Rheumatoid Arthritis, Fibromyalgia, Scleritis. These three chronic diseases are constantly on the forefront of her mind, but they are not the only conditions she has had to learn to cope with. Her story of dealing with chronic disease commenced when Tessa was born, when she was originally diagnosed with Klippel-Feil syndrome. The full list of conditions includes: Hypothyroidism, Sjögrens Syndrome, cervical disc disease and Vasculitis.
How do your conditions affect your lifestyle?
Two or three times a month, the pain from my conditions are so bad, that I cannot drive. In order to compensate, I have to rely on the help of family and friends to drive me where I need to go. I live with constant pain in my neck, lower back, hands, feet and hips. I had to learn a long time ago to take different medications on a daily basis and how to balance these medications.
What are some of the medications that you have to take?
To help cope with all these conditions, I have to take Lotemax or Durezal for Scleritis, Celebrex, Arava and the biologic, Actemra for my RA, Cymbalta, Savella and Tramadol for fibromyalgia and Levoxyl for the hyperthyroidism. I also take Vicodin for peaks in pain. As a result of years of taking pain killers to manage all my conditions, I require a stronger dose (7.5 mg) in order to keep the pain under control.
What doctors do you see? How’s your relationship with your doctor?
I keep a team of doctors to manage my different conditions. I keep a document to keep track of each health care provider and what their specialty is. The list includes a primary physician, rheumatologist, endocrinologist, chiropractor, orthopedic surgeon, dermatologist, immunologist, two ophthalmologists – one standard and another cornea specialist for the Scleritis.
Tell us about your insurance.
I am on Medco for my prescription insurance. My main problem deals with the long wait period when it comes to changing biologics. Since I have to change every eighteen months, I have to deal with this issue every time. It typically takes about 60 days for the insurance company to approve my switch to another biologic. This is a result of the expense of the medication, around $1,500 to 3,000 a month depending on the biologic. Thankfully, my rheumatologist often takes care of the pre-approvals, but I know of a lot of people who do not have insurance, or the insurance they have, they have to do the follow-up with the doctor or the insurance companies themselves. I am grateful that my doctor and his office take care of this process for me. Sometimes this process can be overwhelming, and the paperwork you need to fill out can be expensive.
When it comes to disability insurance you can be granted the benefit though every three months you have to continually recertify your disability even if you have been granted SSDI as permanent disability. This can be extremely costly and exhausting to collect and continually fax, mail and send the information repeatedly to the insurance company. Last time I had to fill out paperwork for MetLife, I ended up paying $65 to doctor’s offices for copies of visit notes.
I am one of the lucky people that I obtained this disability insurance while I working for IBM for twelve to fifteen years. I opted for a long-term disability option, which provides me with 50 percent of my salary at IBM, but because of my pre-existing condition, I was never able to pay the premium to receive 66¾ percent of salary. Metlife and SSDI split the payment of my monthly income currently. I do not think I would be able to survive on just the SSDI benefits.
What would you tell insurance companies if you could right now?
I don’t understand why we have to constantly be reapproved for every biologic if it stops working. The doctor wouldn’t prescribe the biologic if it wasn’t absolutely necessary. I have to wait for the insurance to approve what my doctor has already decided is the best next move. Sometimes, it comes down to having to “pick my poison”. I have to decide if the risk of a ruptured intestine is worth being able to walk or use your hands every day, or do I want to take one particular drug that could possible cause lymphoma?
What would you say to the law makers who can fix this?
The state of NJ has approved the use of medicinal use of medical marijuana (MMJ) for people on chemotherapy diagnosed with cancer. Since I do not have cancer, I cannot use this therapy option even though cancer patients are on the same drugs as people with RA. These Fibromyalgia drugs are not approved by the FDA for use on Fibro patients. As an alternative, some of us have to take drugs like Nuvigil or Provigil, which have out-of-pocket costs of $350 a month for just 30 pills.
What would you say to other going through this?
I would tell them the same thing I tell people in my support group of 60+ people in the South Jersey, Philadelphia area. I give them a list of helpful websites, including CreakyJoints and others which give them practical help. For example, one website shows patients how to fill out doctor and insurance paperwork properly. I also advise people to befriend someone at their insurance company’s customer service office and their rheumatologist’s office. Just be nice to them, and keep in touch with them. They can help you get through the red tape. Most importantly, people should make sure that people do not try to take this one by themselves; Talk to someone – even if it’s just on the phone.