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My battle with RA unofficially began with a first autoimmune system in 2004 and officially with a diagnosis in 2009. Since then it’s been an ongoing battle with symptoms, multiple joint surgeries, and trying every treatment available to modern medicine. But for now the disease won forcing me to stop working. I’ve been on short-term disability since January 1st and starting July 1st, I will begin long-term disability (LTD). My rheumatologist and I have talked about this over the past couple of years and it finally came to the point that I just couldn’t keep up with work.

I am fortunate to have an employer that takes out a LTD insurance policy for each employee. The cost of this policy is quite low per person but the benefit is a real blessing when it is needed. There are very few employees who need to access this benefit and in fact, I was the first case for my human resources case manager. The process for applying involved starting with short-term disability (STD) and having my rheumatologist complete Family Leave and Medical Act (FLMA) paperwork. STD is covered by my employer, initially lasts for 3 months at full pay and benefits, and can be extended for another 3 months at 60% pay and full benefits. During the STD, paperwork for LTD was processed and include multiple forms and having all medical records sent to the case manager. Once all the paperwork was in, a decision came rather quickly to approve LTD.

One requirement for LTD was being off work for at least 180 days. That is accomplished with STD. The benefit for LTD includes 60% of my base salary plus continued employer contributions to my retirement account. I will eventually apply for Social Security Disability Insurance (SSDI) and the LTD insurance provider uses legal staff to help in the application process. Once SSDI is approved, any benefit given will be used to offset that portion of my income benefit from LTD guaranteeing that I’ll be insured of receiving the 60% of base salary. I’ll be able to use COBRA to continue health, dental, and vision for up to 29 months and once SSDI is approved, I can move to Medicare and supplemental insurance. The LTD is for 24 months and if I remain unable to work, the classification will change to “disabled” and the benefits remain the same. My LTD insurance provider has a return to work incentive whereby I can engage in part time work up to 40% of my base salary essentially providing me with 100% of my salary before disability. If SSDI is approved, the return to work incentive becomes much more complicated but I’ll cross that road when I get there.

This process brought about a whole host of feelings from relief of the stress of work to facing the unknown. Upon diagnosis, one of the first thoughts that came to mind was the notion of being disabled someday. That day has arrived for me. But I’m so thankful for supportive family and friends and an employer that really cares about us and had the forethought to provide LTD insurance.

The good news is that with the advent of biologic medicines, the rates of RA-induced disability are lower than in previous times. However, there remain a large proportion of RA patients who end up unable to work and are at the mercy of SSDI alone. This puts undo hardship on those who suffer from the debilitating effects of RA.

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My right elbow has been giving me troubles for over a year now and my rheumatologist referred me to an orthopedic surgeon who specializes in hands and elbows. An MRI revealed a 50% tear in a tendon. Other parts of the elbow exhibit pain. In fact, the left elbow also displays the same symptoms but to a lesser extent probably due to the fact that I am right handed. The orthopedic doctor knows about my struggles with RA and my history with soft tissue damage. In fact, he works in the same clinic with the surgeon who conducted three surgeries on my ankles.

A bevy of conservative treatments were prescribed starting with rest and immobilization with splints designed to prevent movement of the tendon. After that failed to help, a cortisone injection was done. The doctor also used the needle to aggravate the tissue in the joint in order to stimulate a healing process by increasing blood flow to the region. Needless to say, excruciating pain was experienced for the next 24 hours but after that, the steroid provided some relief…for about 1 month after which time the pain returned. Occupational therapy was then prescribed. Occupational therapists (OT) tend to focus on the arm from the elbow down to the hand and they engage in treatments similar to physical therapists. Treatments included heat and transcutaneous electrical nerve stimulation (TENS), gentle stretching exercises, and continued use of immobilization with splints. The goal was to move into more rigorous strength building exercises. But this goal was never met as the pain only became worse. After several months of OT, the therapist made the decision that things were getting worse and indicated that I need to return to the surgeon to determine next steps. At about this time, severe neck problems were popping up and the orthopedic surgeon and I both agreed that priority needed to be given to the neck. The past six months were devoted to recovering from neck surgery.

The elbow continued to cause problems and it came to the point where use was difficult and pain was constant so I returned to the orthopedic surgeon. He said that surgery to repair the torn tendon and its attachment point to the bone would be the next option. But before doing that, he wanted to try one more, last ditch strategy – a platelet-rich plasma injection or PRP. He admitted that the research was sketchy and that it was not an FDA or insurance approved treatment. I would be required to pay for it out of pocket and the cost will be about $300. His argument is that in spite of the lack of experimental research on its effectiveness, there is clinic evidence, it is relatively inexpensive, and it is not as invasive as surgery. He did give me a choice between PRP and surgery but his comments were, “If it were me, I would do this first before having surgery.”

In PRP, a patient’s blood is drawn, platelets are separated from other blood components, and the concentrated solution is injected into a joint that has tissue damage in an effort to jump-start a healing process.[1] The theory is that growth factors contained in the platelets are able to help damaged tissue heal. It has been applied to tendon areas like the Achilles and elbow where there is a lack of blood low and healing is difficult. This approach is quite popular with professional athletes but clinical trails show mixed results (Harmon & Rao, 2013).[2]

In medical practice, there is a range of possible qualities of treatments. Balshem et al (2010) categorizes the ranges from very low quality to high quality evidence.[3] The approval of drugs would rate as high quality evidence. At the lowest end of the evidence quality continuum would be treatments that have little or conflicting evidence. Platelet-rich plasma would rank at the lowest end. This is why the FDA and insurance companies won’t approve it. There is even less research about PRP and rheumatoid arthritis. A search of research studies specific to RA revealed one study conducted on pigs[4] and another conducted in 1989 on knees of RA patients.[5] Never provided sufficient evidence documenting the effectiveness of PRP for rheumatoid arthritis.

Given the lack of evidence, I remain quite skeptical about PRP but am willing to give it a shot (pun intended) in order to avoid surgery.

[1] http://orthoinfo.aaos.org/topic.cfm?topic=A00648

[2] http://www.ncbi.nlm.nih.gov/pubmed/24319241

[3] http://www.jclinepi.com/article/S0895-4356(10)00332-X/abstract

[4] http://onlinelibrary.wiley.com/doi/10.1002/art.30547/full

[5] http://link.springer.com/article/10.1007/BF00270285#page-1

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When dealing with a chronic illness, it can sometimes feel like being a patient is a full time job. Last week drove home this feeling. It began Wednesday with a visit to a new internist (general practitioner-GP). I decided to switch GPs for several reasons primarily to get all of my doctors under one clinic roof who all share the same electronic system and who can easily connect with one another if needed. Being that this was a first visit, additional medical history paperwork was required. The evening before, I typed up a brief history, printed it out, and brought it along. My daughter joked that it looked like I was writing a school report! I’ve learned that this is a great way to lay everything out in black and white so the doctor can get the whole picture quickly. This visit ended with the scheduling of a follow-up in two weeks along with lab tests for fasting glucose and lipid panels (related to metabolic syndrome – see earlier posts).

On Friday, most of the day was spent on medical tasks. It began with a weekly methotrexate injection right after breakfast. I learned that the syringes sent by the mail order pharmacy had huge needles which were not fun pushing into my stomach. I made a note to pick up smaller insulin needles later in the day.

I then headed out the door for a visit to my rheumatologist. I was so happy when the nurse and not the medical assistant came to bring me to the examination room. This was because I needed her to help process a co-pay assistance for the last two Actemra infusions I had in March and April. The almost $900 of co-pays were sitting on my bill from the clinic and I wanted to get those cleared. The nurse needed to make copies of the bill and my co-pay debit card in order for money to be loaded on the card so I can pay the bill. Once the funds are loaded, I will need to go to the business office of the clinic to pay the bill.

My rheumy came in and we had a long discussion about how things were going. She decided to up the dose of Remicade to 600mg per infusion and give infusions every four weeks instead of every six weeks. We’re just not seeing the impact expected by these RA treatments. After being on so many treatments, it’s easy to get cynical and I work hard at trying to avoid falling into a negative mindset. We also discussed recurring headaches and she added leucovorin once a week to be taken after the methotrexate injection. Leucovorin in a form of folic acid and is used to combat side effects of methotrexate. She also decided to give a cortisone shot in my right knee which has been getting worse over the past few months. It was a pretty painless procedure and after several days I can notice much less pain and popping. I just wish every other joint could feel that way!

After the rheumy appointment ended, I went straight to the infusion clinic to see how soon I could get in for an infusion at the new dose and treatment schedule. They said they could get me in that afternoon. I scheduled it and then as I walked away, I realized that insurance approval would likely be required first. I went back to the rheumy’s office and talked to the nurse. She confirmed that approval would be required and that she would call me when it came. Back up to the infusion clinic to cancel the appointment! But I wasn’t done with the rheumy yet. She ordered five lab tests – routine liver, kidney, and inflammation tests – so I headed to the lab for a blood draw. The c-reactive protein test came back high once again confirming that systemic inflammation is actively at work and the RA is not under control (but then again, I already knew that based on the way I feel).

After this appointment ended, I had an appointment with my neurologist. Nasty headaches had been raising their ugly head again and he wanted to figure out what was going on. The good thing is that the addition of an injection of solu-medrol cortisone prior to Remicade infusions helped control headaches associated with the infusion. He believes that my body is reacting to all the medicines and he added a preventative medicine in addition to the Imitrix abortive medicine I already use. He said that he would want to get an MRI if I wasn’t better in a couple of weeks.

It was noon by the time I left the clinic and then I went to the pharmacy to pick up some scripts – and the smaller syringes! That took about an hour as there were questions on the script along with new health insurance to process (thanks to changes in U.S. healthcare laws).

Almost the entire day was spent navigating medical systems and providers. I know the clinic like the back of my hand…best place to park, location of restrooms, coffee shop on 1st floor, lab on 2nd floor, rheumatology office 4th floor, infusion clinic 5th floor, neurology 8th floor, internal medicine 9th floor. Whew! I was tired and ready for something non-medical related at the end of this crazy day. Add to such a day the time spent in the infusion clinic, time processing insurance and payment paperwork, communicating with doctors via phone and email, and down time just trying to rest, being an RA patient feels like a job.

The good news is that during one of the of doctor visits, I picked up the July issue of the city magazine because the cover story was about “Top Doctors” in the city. I glanced through the different sections and was so pleased to find my rheumatologist and neurologist both listed as one of the top six in the city in their respective specialties. This helped confirm that I choose the right doctors and was under quality care.

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There are major changes coming to health insurance in the United States. Healthcare systems have been under scrutiny for years and costs are spiraling out of control. The Patient Protection and Affordable Care Act, or “Obamacare”, was passed in 2010. The jokes at the time were that the legislators had to pass the bill in order to read it because it was so long and complicated. The changes outlined in this bill will begin to go into effect in 2014.

At the time of it’s passage, not much attention was paid to it. But now that it’s getting closer to implementation, the Human Resources department at my employer started offering a glimpse of what was to come. My decision will need to be made fairly quickly as the open enrollment period will be over by the end of April.

Because of an excise tax on employers if costs go over a certain amount per employee, costs to employers are going to be limited and will be shifted to employees (see this article explaining the shift). Much of the changes involve state level decisions. Some southern states are trying to opt out of the law (see this article). Depending on each state’s system, the federal law will increase health costs. In fact, a recent study by statisticians showed that claims will increase on average by 32% with Ohio predicted to increase by 80% and Florida by 20%.

My employer is offering a similar health plan like I’m on right now but the premiums will cost me 29% more than I’m currently paying. Or I can switch to a high deductible plan, like a $4,000 deductible for a family, and start a health savings account (HSA) that is tax free. My employer said that they will put some money into the account to get started. These high deductible plans don’t include a pharmaceutical plan – they are included with all costs. This clearly favors those who don’t need to access expensive healthcare or medicines. My RA meds retail upwards of $30,000 a year. If I had an HSA, it would be eaten up in the first few months.

The bottom line is that I’m going to pay more for health insurance costs under Obamacare. In fact, my 1.7% raise that I just received will be completely eaten up paying for the increased premiums or out of pocket payouts. These may be difficult waters to navigate over the next few years for those who are “Medically Vulnerable” like those of us with chronic diseases such as rheumatoid arthritis.

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Image Public Domain

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I’ve been on four biological medicines over the past 3 ½ years to treat rheumatoid arthritis. I’m thankful for these complex drugs as it’s clear that they slowed disease progression. I’m currently taking Orencia. After a recent Orencia infusion, my insurance company sent an Explanation of Benefits (EOB) form showing the cost and coverage of the medicine and infusion services (see a photo of the form). The form shows that the charges billed by the infusion clinic for the Orencia was $4,425 for 1,000 mg of medicine. I’m curious about the source of this cost and can only assume that this is the cost suggested by the drug manufacturer Bristol-Myers Squibb…sort of like a “suggested retail price.” The adjustments made by the clinic were for $2,609.25 making the final cost of the drug that the insurance company agreed to pay $1,815.75. The mark-up on Orencia must be huge if the adjustment was almost 59% less than the original cost. Insurance companies obviously know the price structures to medicines and know what price pharmaceutical companies and clinics will actually accept in order to cover their costs. The clinic also charged $367 for the infusion which included the nurse and equipment. My insurance company agreed to pay $260 for these services. The total cost of this infusion was $2,076.29. A total annual cost of such infusion treatments would be $24,912. And that does not include other costs associated with my RA treatment including other medicines, doctor visits, blood tests, imaging, and surgeries.

I had already met my deductible for the year so there were no out-of-pocket expenses this time. However, pharmaceutical companies know that deductibles and co-pays can present huge financial challenges to patients and many offer co-pay assistance. Bristol-Myers Squibb provides an assistance plan where they will pay all but $5 of each infusion co-pay costs (just for the medicine, not the clinic costs). They actually sent me a debit card and loaded it with “cash” ready to be used to pay the clinic any co-pays not covered by insurance. I used this card to pay for thousands of dollars of co-pay costs to the clinic during the first six months of the year.

Biological medicines are understandably expensive because of the complex manufacturing processes involved. Such medicines also have extended patent protection over chemical pharmaceuticals in order to help drug companies recoup the extensive cost of research and development. Those costs are passed onto the patient. Every time an Orencia commercial comes on the TV, I wonder about the cost of publicity – a relatively new thing in the pharmaceutical industry.

The wild difference in charged costs versus covered costs as shown on the EOB can only make one wonder about drug company profit margins. Clearly biologicals are big business. In 2010, Amgen’s Enbrel had over $3 billion in sales just in the United States.[i] This represented 23% of Amgen’s annual sales. Humira is projected to be the world’s biggest revenue drug by 2016 with over $10 billion in annual sales.[ii]

The real cost of Orencia isn’t a mystery that I will likely solve any time soon. There are numerous business and political players involved. I’m just thankful for a medicine to treat RA, insurance coverage, and co-pay coverage by the pharmaceutical company.

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In a post from last October, the eccentricities of navigating the medical system were described. The same story repeated itself today and is as follows…On Friday afternoon, my rheumatologist prescribes a new biological medication – Humira. I indicated that my insurance would only work through a specialty pharmacy when dealing with biological medications. In the computer, he “sends” it to them.  Within the hour the local pharmacy calls and says that the prescription was received and would need prior authorization from the doctor. Why did the local pharmacy call? This is on Friday at 5:00 p.m. so the weekend puts everything on hold. In the meantime, out come the prednisone steroids to knock down inflammation (along with fun side effects which are not pertinent to this story). A call on Monday to the specialty pharmacy in another state is made and they indicate that they did not receive the prescription and would contact the doctor. A call to the doctor only results in a message being left and no return call. A call to the local pharmacy later in the day is made and the pharmacist states that they do have the script but that she would contact the specialty pharmacy in another state (same company but they never seem to talk) and the doctor to let them know that the script must be sent to the specialty pharmacy. She mumbles something about prior authorization being needed by the doctor before the insurance would approve it. Within the hour I receive a cell phone text message from the local pharmacy indicating that my script was ready for pick up. I called and spoke to a technician. She says that a Humira autoinject pen is ready and would cost $4,000! At this point I wanted to scream! But I calmed down and will wait another day suspecting that the doctor will get it right on Tuesday by faxing the script to the correct pharmacy and getting prior authorization from the insurance company. My insurance company approved Enbrel and Cimzia and I can’t imagine that they would not do the same for Humria (it’s about the same cost). In the end, it will all be good and I’ll get to start the new treatment. In the meantime, I’ll have “fun” riding the carousel.

Photo Credit: http://www.flickr.com/photos/joeshlabotnik/

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