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.
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?
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