Politics, Part 2

Approximately one year ago, I wrote my first blog entry, “Politics,” after agreeing to what I thought would be dipping my toes into CMV advocacy. I soon became swept up in a tidal wave of activity and less than three months later, we had actually passed a new law in Idaho.

It’s one of those things. If you’d asked me 5, 10, or 20 years ago whether I had any interest in government, any inclinations toward political advocacy, or any plans to incite change via policy making, I would have answered with a resolute, “no.” And my dear friend who called to ask me to participate in the Idaho CMV Advocacy Project, got me to reluctantly agree by assuring me that for at least a year, my job would just be to meet with various legislators and educate them about CMV and our concerns. That was the least I could do, I thought. But my friend, already knee-deep, was ready to go and found that one of the very first people, if not THE FIRST person she spoke with, not only agreed to sponsor a bill, but found the topic so compelling that he saw no reason for us to wait, as planned until the next political season to try to push the bill through, but to go ahead THIS year! That meant NOW.

Well, how do you say no to that? This was quite possibly a once in a life time opportunity and if someone is willing to sponsor your bill, you don’t turn that down. Ok. What do I need to do? I had no idea. But I put one foot in front of the other. One phone call led to another and another and then a meeting and then a hearing, etc. It was a crash course in local government. What’s a bill? How is it passed? Why do you need a sponsor? Actually, why do you need a law? What’s a hearing?

Before I knew it, I was swept up. On more than one occasion, I’d be “sending out a few emails to legislators” at my kitchen computer and before I knew it I was having to order pizza because the roast I was going to put in an hour ago was still  thawing in the fridge while time flew by unnoticed. Day to day stuff would go undone and the boys knew “Mom’s doing CMV stuff again.” One sponsor turned into two and the three. Countless calls, emails, and in-person meetings with legislators and their staffers, doctors and their assistants, radio, newspaper, and TV journalists, other advocates and CMV moms nationwide.  I wrote, edited, and rewrote flyers, testimonies, and educational materials. I copied materials, stuffed folders, delivered and mailed pamphlets.

Of course, my three companions were simultaneously doing very much the same thing. It was a job in which there was always more work to do. Always more people to call, whether for an initial contact or to follow up or to provide more information. And, in the end, we just did as much as we possibly could before time ran out. It is my understanding that in Idaho, the House and Senate leaders meet only from January through March of each year. So if you want a bill created, read, heard, and/or passed, that is when you need to do it. And after March, there are 9 months for the committees to forget about you, and that’s assuming it’s a year in which the legislators and committees will stay the same because they are not undergoing an election that year.

Throughout this process, we felt that nearly everyone we talked to was extremely receptive to what we had to say. Oftentimes, we would start a conversation with a legislator cold by presenting them with the following graphic, emphasizing that though they surely had heard of HIV, Downs Syndrome, and Spina Bifeda they mostly likely had never heard of CMV. We then went on to talk about our own children and our simple request for help in raising CMV awareness. The response was typically and incredulous, “Why have I never heard of this before?” Females noted that they had known to stay away from fish and cheese and the cat litter box for things less common and/or devastating.

Our goal for a bill, after a lot of research and consultation, was for our state’s health department to give CMV at least the amount of attention that it gives to other public health concerns that affect pregnancy outcomes. That is, we wanted them to put CMV on their website, adding educational information and frequently asked questions. We also wanted to the department to issue informational materials that would be disseminated widely across the state to physicians’ offices, daycare centers, and public health service centers. Here is where we started to brush up against some resistance.

The health department was a little hot and cold. Long story short, they seemed to pay lip service to the importance of CMV education but it was just that. Granted that they are pretty fiscally limited, particularly in Idaho, we came to see that part of the hesitation was because of they blow back that could ensue from doctors. Frankly, and understandably, the medical community doesn’t necessarily want to take orders from the local health department because the health department does not, by and large, house the leading researchers and practitioners in each medical specialty area. Truly. It soon became clear that I was far more educated about CMV than any of the point people that I spoke with at the health department regarding the possibilities of this project. “But why would doctors dissent if they are just handing out educational pamphlets?” you might ask? Well, the arguments we heard were that doctors already feel burdened by how much information they need to get to pregnant women, so they didn’t appreciate having more. They particularly don’t appreciate being told to distribute the information when there’s “nothing you can do about CMV anyway” which speaks to the very necessity of the project in the first place because CMV is actually quite preventable but many doctors don’t realize that.

Confused? Refer to Bekah’s Way, WAY Oversimplified Illustration of Why It’s So Hard to Get CMV Prevention Off the Ground

So, moving up the food chain a bit, many doctors are under-educated about CMV and have come to believe that it is rare, it is not preventable, and there is nothing you can do about it. All three of these things are wrong, but not all of them are things that we (read “wee”) parent advocates can tackle. Many doctors need updated education about how to detect CMV and why that is important. And THAT is where we hit a road block. The powers that be (Centers for Disease Control, Food and Drug Administration, Academy of Pediatrics, American Academy of Obstetricians and Gynecologists, to name a few), the people who actually write the book on the “best practices in medicine” are a little behind (in my humble opinion) when it comes to keeping up with the times in regards to cytomegalovirus. The last I heard, the standard of practice for OB/GYNs upon learning that a fetus is affected with CMV is to advise termination of the fetus. Period. That’s it. No mention of prevention. No mention of treatments that have been proven effective (Cytogam) when used to treat a child in utero. No mention of testing for CMV infection in a pregnant mother. No mention of testing a child for CMV after birth. No mention of treating a CMV infected newborn with antiviral treatments. Clearly this is territory that is much more appropriately broached by the big wigs. The movers and shakers in medical research, industry, pharmaceuticals, and policy making. The current and accurate information needs to be used to inform the standards of care that all doctors are required to follow in the United States. Without it, my pamphlets in doctor’s offices are more likely to be seen by physicians as pesky leaflets of pseudoscience legislated by a couple of angry mothers who don’t understand the whole story. Although, excuse me, I think they are the ones who don’t understand the whole story.  

As mentioned, I believe that physicians in the U.S. are generally under informed about CMV. And, if they are informed, they find little support to do anything differently because of the current published standards. For those few conscientious physicians, dealing with CMV is an uphill battle. There is little guidance about when and how often to test for CMV. The evidence for immunoglobulin treatments is mostly done on foreign soil and so is still considered experimental in the U.S. That means it is extremely unlikely that these very expensive treatments will ever be covered by insurance and could be an enormous liability for the physician.

The more I understood about the nature of this problem, the more discouraged I felt. Convincing the average citizen that CMV is an important thing to know about and prevent is a pretty reasonable thing to do. But once we get past local legislators and work up the chain to professionals who actually know what is at stake with CMV and its treatment, the punier we seem to be. And the more depressed I am to find that there are great big politics, dare I say even corruption and decisions made based on wealth rather than the health and well-being of the citizens and I almost wish I didn’t know what I know.

And with all of that, I just had to step WAY back and remind myself to focus JUST on prevention. It gets too messy otherwise. But as you can see, it’s difficult to talk about prevention without people inevitably wanting to know about treatment if the prevention doesn’t work. It’s so sticky.

But it worked! Or, at least, we achieved our unlikely goal of passing Idaho’s first CMV legislation on the first try. I am proud of that. I do think we did something good. Something great, even. And I was surprised to find that I have some skills that make me fairly good at advocacy including not only a passion for the topic of CMV, but fairly good writing skills, comfort with public speaking, and the ability to sound (mostly) like I know my stuff when asked difficult questions on the spot. But the task and the process grated on me all along. I felt like I was supposed to be a saleswoman. I am not a saleswoman. All along, for reasons described, I wasn’t clear and confident in our ultimate vision. I always disliked, networking, schmoozing, dare I say kissing up to people I didn’t know. In this case often individuals I would never, in a million years have voted for.

There was a lot of psychological dissonance created in me, too, when I was spending so much time and energy trying change the state of CMV when… my daughter won’t be changed. In many ways, some explicit and some less overt, I was preaching that my daughter is not ok. I mean, we had her in the room of the hearing, essentially as a living, breathing example of everyone’s worst nightmare and what we all want to avoid at all costs. When in ALL OTHER SETTINGS of my life, I’m saying, “look at this lovely girl,” “there is so much beauty to be seen here,” “there is so much to learn from her.”  

We were commended over and over for our hard work and told that it was an incredible accomplishment in such a short amount of time. Like I said, people were very receptive to our stories. Keira and the other kids are powerful! But I think the real reason why we had so little resistance is because we are so low on the food chain in terms of making widespread changes happen in the CMV world. There isn’t a whole lot that can be done from the ground up, though that didn’t make it fruitless. But I do think that if we’d been seen as a threat, a lobbyist from the Academy of OB/GYNS or another organization could have squelched our success at hearings pretty easily by telling some other select details. As advocates, we were telling only parts of the story and knowing that it’s so much more complicated than what we are presenting. It’s politics and we were playing the game just like everyone else. But I don’t like the game. I don’t really want to play. I hate second-guessing everyone’s motivations and intentions. It felt…gross.

That said, and for what it’s worth, I met many politicians who I respect very much.  I have a better understanding of what they do for us as a community and I appreciate this work that they do. I believe that they have good hearts and a genuine desire to help people. They know how to play the game and are willing to play the game in order to further the common good. My hat goes off to them because I’m just not built to stomach it.

So what now? The new law was officially effective in July of this year. The health department now has a budget of $15,000 per year to work on this project and as far as I know, they are “actively” developing literature that will be distributed across the state. And as for the Idaho CMV Advocacy Project, we are still here, but probably only one of the moms still has all the passion and drive as she did a year ago. A couple have all but bowed out after the accomplishment of this year. Personally, I still consult with the group and I speak fairly regularly with medical and professional boards and organizations in the area regarding CMV prevention. There is some interest within the group to continue with further legislation and there are several legislators who have become passionate about the cause and are willing to support it. I, however, for the reasons enumerated here, do not feel that I could confidently support much more legislation before some major changes start happening from the other end of the CMV food chain.

***

Whew. It feels good, actually, to have written all that down. I’ve avoided writing about it for a year, afraid that laying it all out there might compromise our goals. Hopefully, we are far enough along now that it won’t really matter. Or at least, if people care enough to read all of this, they will understand my heart and therefore my reservations about working in the political system. In the end, I figure, this is part of my story. And it’s part of Keira’s story. And what good is the story if I don’t expose the dark and twisty (thanks, Grey’s Anatomy) parts?

Baclofen

Baclofen is a medication for treating spasticity that Keira has been taking for about two years now. It was initially prescribed at a very low dose by her physiatrist, who told us it was best for us not to Google it and, rather, ask him if we were worried about the risks. To put it simply, Baclofen has serious risks of overdose and/or withdrawal. Patients also tend to require higher and higher doses when using it long term. We suspected going in that if Baclofen worked for her, she may eventually need a pump.

We saw good effects from the drug pretty much right away. Keira’s muscles were looser and she was more relaxed over all. Initially, she was extra enthusiastic and giggly, as if slightly inebriated, but that part subsided. Therapists noticed that her volitional movement increased and she was less dependent on her primitive reflexes and tone. It became clearer that with the decreased tone also comes less vomiting.

Over the past 2 years, the physiatrist guided us as Keira needed a higher and higher dose of Baclofen more and more often. We eventually added a fifth dose to be given nightly between 2 and 3 a.m. We can bet that without that dose, she'll wake in the morning in a puddle of vomit and will be extra irritable.  

In April of this year, we had already reached the point where the doctor did not want to increase the prescription any further. He schooled us on the ins and outs of the pump and we decided to take the next step, an inpatient “trial” to see if the pump would be a viable option. We left that visit and waited for a phone call to schedule this one-day experiment in the ICU. 

Weeks passed with no phone call and I came to find that Keira’s physiatrist had had a “family emergency” and would be out of the office for several more weeks. Weeks turned to months. Repeatedly, there was a day set for his return and then he would not meet it. There was no other physiatrist or physician competent to handle Baclofen issues in the Boise area, even at the competing hospital.  

Keira's physiatrist was not even available for consultation or in case if emergency. I felt for his poor office staff who had to handle all of the phone calls from parents like me. I was a worried mess come July when Keira was due to have her next hip surgery. I was getting mixed messages with some clinicians advising that the baclofen pump surgery should come first, before the hip surgery so that Keira's high tone was less likely to damage the effects of the hip reconstruction. The hospital was supposedly working on credetialling another physiatrist so there would be some backup, but this was going to take months. We felt we had to do something, so we went ahead with Keira's hip surgery in hopes that the pump surgery would be close behind. The hip surgery went beautifully, but when the cast came off after 6 weeks, Keira's old patterns resumed in the way we feared, which threatens the longevity of those reconstructed hips.

The whole situation with the physiatrist felt so strange. I suspected that the doctor had either ended up in rehab or in jail. Otherwise, how could he suddenly be so completely unavailable? It also felt very tenuous. Here I am in Nampa with my child in this serious drug with no MD to help us any closer than Twin Falls. Nobody. 

Finally, in October, just as it was looking like the backup physiatrist would get credentialed before ours would return, he died. Suddenly and unexpectedly. 

This was heartbreaking. This specialist had really felt like part of our team. He was one of the first specialists that really seemed to get it. I loved him because he didn’t beat around the bush. He wasn’t afraid to call it what it was. He labeled Keira "medically fragile" and stated that we could never be certain whether she would wake up on any given morning. And at the same time, he wanted her to be happy and comfortable. He referred us to palliative care, one of the best connections we've got. He always asked how the kids were and recommended that my husband and I go on “wow” dates. One of our people, one of Keira’s people, was gone. 

I was so disappointed. I couldn’t help but think that he must have committed suicide. Or overdosed on drugs. I have no sound basis for this presumption. It’s just a feeling I get after trying to read between the lines. His obituary was sparse; little more than birth and death dates. I feel so sad for him and his family and his patients. But also, frankly, a little angry at him. You understood. You got it. And you opted out. It’s not fair! I can’t just check out; why can you? I thought we were a team. It's a strange position to be in. As a patient, or, rather, the patient’s mom, there was no outlet or ceremony or designated space for grieving. I didn’t know him personally and therefore I’m not entitled to participate in any funeral or memorial. Yet because he really understood, it felt like we lost a fairly intimate relation. 

For better or worse, the doctor’s death seemed to expedite things at the hospital. There is now a physiatrist in Boise a few days each month and available by phone. This doctor met us later in October for the pump trial. He is a wonderful doctor in his own right. He’s got a pleasant bedside manner, was comfortable with Keira and has first hand, meaning personal, experience with muscle spasticity. 

Keira was incredible on the day of the trial. Typically, kids get sedated for the procedure, but when I pointed out to the doc how little Keira actually wiggles, he agreed to try without sedation. The procedure involved the injection the Baclofen directly into her spine (Like a spinal tap, I’m told) and Keira  didn’t. Even. Cry. My guess is she was enjoying all the attention. There were probably 8-10 clinicians in the room at the time. Lots of observers because, once again, we were in territory that they don’t cover often. 

After the injection, our job was to just sit back and observe the affects. We were in the ICU primarily as a precaution in case the drug suppressed her breathing. It was actually a pretty fun afternoon. There is no better way to describe Keira than “noodly.”  She was absolutely limp and relaxed. Flaccid. Too relaxed, really, but the trial is really a firehose blast to see if the drug will work ultimately.

I was surprised and glad to see how limber Keira’s legs were. This was good news because it means that so far, the spasticity hasn’t actually limited her muscles ability to develop in length. Most astounding to me were Keira’s feet. In the past year it has struck me how more and more her feet are looking twisted and, well, deformed. With the relaxing agent on board, her feet looked utterly normal. 

Fast forward to December. Keira and I are sitting in the back seat of the van as we approach Salt Lake City. There is currently no neurosurgeon in Idaho who does pediatric Baclofen pumps, so Primary Children's Hospital it is!

Today we’ll meet the surgeon and tomorrow Keira will have surgery. She’ll have a hockey-puck sized pump put under her skin below her rib cage. Then a catheter will be threaded up her spinal cord as far as they can get it. The further up the spinal column, the more likely the drug will help her with her neck, shoulders, and arms; not just her legs. The pump works by continuously delivering microdoses of medication directly to where it needs to go, making it much more effective and efficient than oral Baclofen. The side effects are obvious discomfort from the implants, misplacement or slippage of the catheter and unplanned withdrawal or overdose. Also, we cannot adjust the dose ourselves, so we have to be in close contact with the doctor.

If all goes well, we should be able to come home on Monday. We'll keep you posted. As per usual, Keira's wonderful brothers are staying with Jeff's parents and my parents will be travelling to Salt Lake tomorrow to take some shifts on hospital duty.