Financial Crisis to Caregiving: An Unexpected Outcome

Beyond the many concerns and questions of being a caregiver I shared previously, I don’t have much experience dealing with the healthcare system. Lisa is quite independent and so she doesn’t often ask for my help with healthcare questions. Recently, however, we had an experience where she needed my help. Through this experience, I found myself growing as a caregiver and I didn’t even realize it at the time.

A little background. As readers may know my wife, Lisa, has MS and RA. This is not something I’d wish on anyone, but oddly enough, having more than one autoimmune disease can have a silver lining. Some years ago, Lisa began to have difficulties and researched for a more effective treatment. She learned that Rituxan, approved by the FDA for treatment of RA and non-Hodgkin’s lymphoma, had been studied for use in MS and that early published reports were quite positive.

Lisa consulted with both her rheumatologist and neurologist about switching to Rituxan. Both physicians were encouraging. Rituxan is an intravenous drug which Lisa soon discovered her health insurance company would provide far better coverage than it did her previous injections. If it worked, this treatment would offer several benefits, namely, she would only need one medication to treat both diseases, the infusions are given every 6+ months, insurance covers 90% of the cost, and the drug company picks up the out-of-pocket copay expense.

Lisa began using Rituxan in 2009 and for the first four years the billing process went as expected: the hospital billed her insurance, her insurance paid based on negotiated/contracted rates, and the hospital then billed Lisa the amount insurance said she owed. At this point Lisa would gather all the appropriate paperwork and send it to the drug company who paid the hospital. Lisa typically only had to pay a few hundred dollars left as her co-insurance responsibility. Simple, right?

In the summer of 2013, an oddity occurred between the hospital charges and insurance payments. Perhaps it was just an isolated mistake, but it meant that the hospital didn’t bill her for the 10% co-insurance. It seemed to make sense since the cost of Rituxan had dropped to the point that insurance’s 90% coverage exceeded the hospital’s total original charges.

Based on the prior year’s experience, Lisa thought a precedent had been set and therefore didn’t renew her copay coverage with the drug company. Moreover, the unused copay card she still had on hand had a 2015 expiration date on it. The bill she received this summer appeared much like last year; her insurance ‘overpaid’ the hospital as it had in 2013. But Lisa also noticed that, unlike last year, the hospital billed Lisa for the 10% of allowed charges listed on the EOB. This was an amount which came to almost $2000. Lisa tried to resolve the situation immediately. First, she called the hospital to correct the bill to no avail. She then tried to use the copay card without success. Then she called the drug company to learn that she wasn’t in the assistance program (2 programs had merged into one) and that it was too late to retroactively approve assistance for infusions that had taken place outside of the past 45 days.

I was sitting nearby and heard Lisa choke-up and begin to cry as she asked who she could contact and appeal to for help. This is where an unexpected caregiving opportunity arose. Lisa asked me if I could make the call to the number provided her. She was too emotionally upset to talk.

I knew I had to help right away. Lisa gave me the phone number for the manufacturer’s other assistance program and asked me to call. I got out my phone and dialed right away. My mindset was that we had likely missed our window of opportunity for the program, but perhaps we might be granted an exception.

I spoke with several people, but eventually did reach a case manager who was quite patient and let me explain our situation. She empathized, but indicated that the company did have a well-defined application policy in place. She told me that despite the unusual handling of the bill by the hospital, we were probably not eligible for assistance because we had not renewed the copay card by the application deadline. Nevertheless, the case manager said she would have our case reviewed by a supervisor. That was all I could ask of them, so I thanked her profusely for her help and said we would await their response.

After I hung up, I relayed what I had learned to Lisa. Her outlook visibly brightened. As she thanked me, she said that perhaps I didn’t realize it, but what I had just done was act as a caregiver to her. I was surprised and considered what she’d said. When I’d picked up the phone, I hadn’t thought at all about providing care. To me it was a financial matter.

But as I thought more about her remark, I realized that I had indeed provided Lisa care. My willingness to step in so that we could get help with our case was more than just resolving a financial matter. I was supporting her with a healthcare matter, one that can be frustrating and wear down many patients.

Our story also has a happy ending. Several days later, the case manager from the pharmaceutical company contacted us to let us know that assistance program had granted the exception and would pay Lisa’s out-of-pocket expense. Lisa was ecstatic when she heard the news. Without even realizing what I was doing, I had just served as a first-rate caregiver.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • Rob author
    4 years ago

    Connie,

    Thanks for your comment. I am always interested in receiving feedback on my articles. I should add that I only recently began writing these articles and had essentially no experience doing so prior to coming on board with RA.net, so I’m still pretty green at this. As such, I’m glad you found my article enjoyable.

    Reading your story was difficult because of how upset it made me feel. In our case, Lisa had already received her medication, so no matter how things turned out for us financially, she had at least received her treatment. In your situation, your treatment was contingent upon financial qualification. We hear a great deal about “miracle drugs” today for various illnesses that were once nearly impossible to treat, but at the same time rarely hear about the miracles it takes for patients to gain access to these drugs.

    I hope that perhaps you developed enough of a connection with the man who assisted you that you may be able to contact him again when you need to begin the assistance process. Please keep us updated on the situation. Please also feel free to reach out to my wife, Lisa. I know Lisa feels passionately about patient advocacy, so I’m sure she would be happy to hear your story as well.

  • Connie Rifenburg
    4 years ago

    I just noticed that when I clicked on the wrong key, I posted part of my “rant”. I will post the rest of it now.

    …. Orenscia being input into my system, I take a step back toward being bedridden by my RA. It is an extreme difference in my ability to live a mostly normal life – with or without the Orenscia. The first year I started IV treatment it took 8 months to get into my system and one day I woke up and had almost NO pain. It was a miracle to me. I could actually roll over and get out of bed in one movement…not sit at each stage of movement and wait for the pain to subside.

    We knew we had hit the jackpot at that point and I never wanted to go off it. Unfortunately, the easy part was that I had a high deductible insurance (at that time) $3000, and then 100%. Well, since my Orencia cost $2500, and the co-pay card covered my copay, by the 2nd month, it was paid 100%. I marveled at that help.

    Unfortunately, as biologics became more available, the funding foundations that could help with RA related needs, ran out of money by January every year. And I was on medicare now, and didn’t qualify for a copay card anymore. That was the year I went 6 months without treatment, and became bedridden by then. The Orenscia had left my body by 6 months, worsening each month. Finally I found funding between a foundation and Bristol Myers to start me back on Orenscia after 6 months.

    Since the product is so expensive (even now, it’s over $1600/mo)no dr. will purchase it until it’s paid in full and no pharmacy will send the medicine unless it’s paid in full, so every month, I needed $1600 to cover ONE medicine. That was an impossiblity, and this year, once again, January brought no funding left for RA. For 3 months, I called, begged, pleaded, tried to borrow, but to no avail…who has an extra $1600 a month to give out to someone on disability.

    Finally I ended up with Bristol Myers(the mfg)on the phone and a very nice man I had worked up the mgmt ladder to. I had begun to get very nasty people on the phone because I had called so often, the were cruel at the worst time…when I needed help the most.

    But I wasn’t going to give up, so finally I reached a mgmt person and told him my story of 3 months, and he stated they had a policy that you had to spend 3% of your income before they would help. Since doing that would require me to save over a period of months to get one infusion, it wouldn’t help me.

    That was my final and worst moment. I did fall apart on the phone. I cried. I begged. I shouted. I had no pride left, and I was getting worse by the month. The only treatment was to keep upping my steroids so I could keep walking and living with the least amount of pain. We all know what steroids do to our personality – especially when you’re up around 60mg a day.

    THIS is when having a person like your husband would have made my life so much more bearable. Advocates are as important as those people who do care-taking tasks. To have had someone to speak to the company on my behalf, instead of falling apart on the phone, begging for help, would have kept some dignity to my life.

    At this point, it still brings tears to my eyes to think of the state I was in. This gentleman at Bristol Myers, heard me out, and promised me that whether or not he could get Bristol Myers to bend the rules, he would call me back and let me know. He was able to bend the rule this year. I got back on my Orencia in April, and slowly backed off the steroids to where I am on 5mg now.

    But I face this whole scenario once again at Dec. 31st when the assistance finishes. I must start Jan 1st to apply to mfg and foundations to get a medication that makes me human.

    To have had a person that took care of that ONE part of my care, would have been such a help. One person can only deal with so much and to have an advocate is only available to those who either can pay for one, or have a loving mate.

    Just one more reason to love your husband (as if you need it).It was a heartwarming read. Thank you.

    Sincerely,
    Connie

  • Lisa Emrich
    4 years ago

    Connie,

    Oh my goodness, I can relate to your story. I remember the hoops I had to go through to get access to Copaxone (a drug I used to take for MS). Being denied assistance, and denied appeals as well. It took several tries (and more than a year) to figure out what my finances needed to be on paper to qualify.

    I’m so glad, though, that you’ve found a treatment that works for you. That is great! I hope that you continue to be able to take less and less steroids.

    Thank you for the kind words regarding my husband. He truly has been a blessing and I am lucky.

    Best,
    Lisa

  • Karmel
    4 years ago

    Rob…..Sativex/Nabiximol is available in USA I believe. Made by GW Pharma in UK but distributed in USA by Bayer I think.

    Is working well on MS and reports it is working on Rheumatoid.

  • Connie Rifenburg
    4 years ago

    Lisa, I just read your husband’s comments and was so happy for the results he and you were able to obtain. I am a single person with RA and several other medical conditions which include OA and Osteoporosis, Wet macular degeneration in my Right eye which is slowly causing blindness, and Glaucoma in both eyes which is being controlled by several methods.

    I empathized with you so much at the point where you had reached your limit with the hospital and became emotionally involved in the phone call. I, and I’m sure others have reached that point and it is one of the most frustrating parts of having a chronic disease.

    I’m not looking for sympathy, believe me, I can be a tough cookie when needed, as I raised my child by myself, working several jobs at times to keep us living a reasonable life. But I have been brought to tears on the phone facing medical care errors, denial of medicines, cost of medicines, insurance company rules, etc.

    Your husband is just what is needed as an advocate. Not to DO everything for us, but to step in when we have reached our limits. Whether it’s emotional or physical limits when dealing with matters that must be dealt with, all of us I believe, need an advocate.

    I remember a scenario that brings me to tears even writing about it now. As in your situation, you were counting on a mfg. plan to help with the drug you found that worked for you. I have had to do this for the past 4 years with foundations that assist with medical costs, with mfg. of medicines, and each year, it is about this time of year that I begin getting prepared to make those phone calls.

    Last year, it took me 3 months before I could find help in getting the Orencia I need so badly. The year before that, it was almost 6 months before I could qualify for funding and since my drug is a monthly infusion, every month WITHOUT

  • Lisa Emrich
    4 years ago

    I’m so thankful that you stepped in and helped. The outcome was such a HUGE relief! Thank you, sweetie.

  • Poll