Back to Reality and the Importance of Meg's IVIG Study...


Sometimes I forget that Meghan goes through this once a month. She has made such huge improvements. Neuropathy in her hands and feet is gone. Unmanageable and debilitating joint pain is gone. Constant stomachache and stomach pain is gone. Most nausea is gone. She eats and enjoys most foods she once had to avoid. Dizziness, light-headedness, racing heart, stabbing heart pains, hot spells, and shortness of breath - gone. But the effects of the treatment only last roughly 4 weeks. IVIG is not an approved drug for POTS syndrome so we had to go to great lengths to get it okayed as part of the study she is in. Many insurance policies even specifically state that IVIG is not covered for POTS (ours does).

In December it will be 3 years of infusions - it once seemed like an impossible task that we would do it monthly. Now we just do it. Sometimes a few tears are still shed on the hour drive to the infusion center. Mostly because she knows it will hurt a little to get it all set up. And that we have to watch 8 hours of HGTV. And that she will not feel great for a few days as the infusion works it's way through her body. Otherwise, it has become our routine. I have to remind myself that it is not routine and that it is a powerful drug she receives each month. (See links below to autoimmunity articles).

In June, right before her brother's graduation party, I opened the mail from the previous day. In it was a letter from our insurance company stating that future treatments and the one she had just received 2 weeks prior were no longer deemed necessary. I knew what it said before I even opened it. I always have that fear in the back of my mind - that some day we will have to stop. The treatments are expensive beyond reason and now we were responsible for one they deemed unnecessary. How can that be? How can you get a treatment and then be told afterwards they are not covering it? And yes, I read the disclaimer that said pre-approval does not guarantee payment.

Monday I started making calls to see what we needed to do next. We are so lucky to have a very supportive group of doctors and nurses that we care about as people. A few of the nurses in Meghan's IV-Therapy center we have come to know well and appreciate greatly. They admire Meghan's strength, and love that she never complains as they poke and prod her. I called our insurance company several times - going through many phone prompts and layers of people recalling our story multiple times. So much time wasted.

It all seemed like such a secretive, scary, wait and see process that was overwhelmingly unfair. We didn't even know her case was being reviewed - and the news came close to 2 weeks after her last dose (and 4 weeks after the review). There was little time to get things done before the next dose was needed. One doctor was on vacation, one doctor fulfilling some military obligations, another's wife had major surgery. We were going to have to wait additional days to get things together. But they were very responsive in getting together an excellent case for our repeal at a moments notice. It was submitted and again we waited in the dark wondering what would happen.

I gave it several days before I called again. Denied. And nothing further we could do. They were sending a letter (which would take another week to arrive). We were now at the date of needing another treatment and symptoms were starting to return.

I disagreed and wanted to know who to speak to next. I also requested a meeting so they could explain to Meghan in person why they would no longer cover her life changing treatments. Initially the nurse said there was no one else to speak to as it was already denied twice - but eventually I was given a supervisor's number and left a lengthy message detailing all we had gone through, including how Meghan wanted to end her life before we started the treatments. And that I was just going to keep calling and talking to the next person. I ultimately wanted to talk to the doctor who had reviewed the case. I wanted to ask him about illnesses of the nervous system and his expertise with antibodies and how they affected the body.

But four hours later, I got a call from one of the nurses the insurance company uses to review cases. She said they looked into the case further and found some missing information from the first approval process and decided to go ahead with another year of treatment. And that because Meghan was doing so well it wasn't fair to her to take it away now. I didn't say anything for a few moments. I had already gone into what's our next plan of attack mode.

After I had a few days to calm down, I sent an email to the insurance company to say that I had some ideas for improving the process and wanted to share our story so that others could avoid the unnecessary stress we had gone through. Someone responded and we set up a call. We talked 45 minutes while she took notes. She seemed genuinely interested in making changes. Things such as a letter well in advance of an upcoming review of ongoing care could go out. This gives the family a chance to make sure information is current and to get additional information together well ahead of any review. And a better way to communicate information timely - calls, emails or maybe patients could choose the best way that works for them. And a case manager or nurse could keep the family updated of the progress. At the end of the day, this would eliminate the time necessary to re-review cases and handle questions. It would save the patients time - not as many calls following prompts, waiting on hold, and tying up nurses that could be helping other patients.

I am lucky that I have the time to take care of these things for Meghan. Some families may not. Or they may not know what to do next. If the insurance company had let us know the case was being reviewed, we could have made sure they had all the pertinent information - we had previously been on a different timeline for review and didn't know it had changed. They also had a doctor Meghan no longer sees (they moved away) as the contact doctor. And they let us know 4 weeks after the start of the review that it was denied. Faster ways of corresponding needs to take place. What about the patients who give up when they are denied and told there is nothing further to be done? That's what we were told.

Communication and patient involvement is necessary. How can you make life altering decisions for someone that you know nothing about when you don't even have all the facts? I am so glad that I spoke with someone who seemed interested in fixing things. I hope they are able to make some changes to make the process not such a scary one.

Meg had to wait an extra week for her treatment. Symptoms started to return and now we are working through her body re-calibrating to catch up to her "good place." Some things she hasn't had to deal with for a while have returned which will hopefully fade to the background as time goes on. Meghan's study, along with other similar new studies, are necessary so that we can get IVIG listed as a treatment for POTS.

Here are two great sources of auto-immunity in POTS:

Autoimmune Basis for Postural Orthostatic Tachycardia Syndrome - NCBI (part of the United States National Library of Medicine)

The Role of Auto-antibodies in the Syndromes of Orthostatic Intolerance: A Systematic Review

Is POTS Really Auto-Immune? Our Blog Post

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