Thursday, July 29, 2010

It Shouldn't be this Hard

After listening to my rant against Jukie’s latest health care snafu, a friend simply commented, “it shouldn’t be this hard.” Such a simple statement, but I have repeated it silently many times since then. Many aspects of raising a child with a disability shouldn’t be so hard. We should not have to fight school districts to give our kids the services they need. We should not have to endure the endless stares and poor behavior of others directed at our children, or the condescendingly “helpful” parenting tips from parents of kids without the challenges our kids face.

And here’s what I’m facing now: it shouldn’t be so hard to get Jukie the medicine that he needs to be healthy. Born with Smith-Lemli-Opitz Syndrome, Jukie cannot effectively produce cholesterol. Cholesterol is necessary for brain function, and other essential functions in the body. Jukie needs cholesterol to live the way that a diabetic needs insulin, or a person with hypothyroidism needs Synthroid. Yet Health Net, our insurance provider, has denied him coverage for the cholesterol supplement (which must be ordered by a medical specialist and compounded into a “medical food” by a specialized pharmacy). Health Net’s second denial letter of our appeal read, “Per Health Net Medical Policy, special medical foods are considered medically necessary only when mandated by state law.” That statement actually denies the medical necessity of the cholesterol just because laws haven’t been written to protect individuals like Jukie with rare syndromes (as they have for say, people with Phenylketonuria, also known as PKU, who also need medical foods).

Our current fight for Jukie’s medical needs began eight months ago, December of 2009, when the National Institutes of Health, which had been providing Jukie’s needed cholesterol, ran low on funds and had to suspend providing all kids with SLO this drug. Sensing an epic battle looming, I immediately got to work trying to obtain it through our insurance. Sounds fairly straightforward? Since that time, I’ve repeatedly faxed, e-mailed, called and visited our pediatric office, a genetic office, a county agency, and the NIH, only to encounter one roadblock after another. And the most frustrating part is that I’m trying to navigate this process without a guidebook. I feel like I did when I was 20 years old, traveling through Germany while knowing only about ten phrases in German. The difference is that everywhere I went in Germany, kindly Germans spoke MY language and offered their help. Complete strangers helped me read maps, order food, find the right trains, and even walked with me to my destination. With this insurance battle, I encounter no one who offers much assistance; in fact, too often I am met with resistance and outright denial. And there’s certainly no guidebook.

It’s times like these that I am grateful for my SLO family. Together, we are writing our own guidebook. We are a tight bunch. Most of us know each other and maintain fairly close contact, considering our distance. On Facebook, we’ve got families in the US, UK, Ireland, Germany, South Africa, Australia and New Zealand. Everyone who had received their child’s cholesterol from the NIH found themselves in the same situation, having to look to their insurance to provide it. Some insurance companies approved the cholesterol immediately. Others, such as mine, repeatedly denied the drug.

As each medical office ran into difficulty, they all gave up. When I called to inquire as to the status of our quest, I’d hear something along the lines of “oh, I thought that other agency was going to handle it from here,” or “I couldn’t find a pharmacy willing to make it so….” I wanted to complete her sentence with “so I never called you back.” Realizing that only I, as Jukie’s mother, had a stake in the outcome, I took control and searched for a compounding pharmacy willing to look at the prescription and also to deal with the semi-complicated billing issue. And I found family-owned
El Macero pharmacy, whose owner, Brad, said to me, “I will bend over backward to make this all work for your son.” Instead of accepting the inevitable difficulties involved, this pharmacist welcomed the challenge, even calling to ask me to tell him more about my son’s syndrome and how it affects him. To parents with medically challenged kids, people like this pharmacist seem like angels who swoop down and rescue us when we need it most. Just when I felt hopeless, this man stepped in and recognized that Jukie and I needed help. And that’s it! We mothers and fathers can feel so alone and invisible while trying so hard to navigate these challenges. For eight months, I felt like screaming, “doesn’t anyone want to help me and my son? Doesn’t anyone see our struggle?” I’m still crossing my fingers that the billing piece works out. But at least now I have someone on our side. And do you know what he said as I thanked him for all of his help and caring? He said, “you’re very welcome. It truly shouldn’t be this hard.”


  1. Thank you Kate, Our struggles are very similar!!!!!
    Love the picture of Jukie with his syringe : )!
    Kim, John and family

  2. What a nightmare for you. Ben has been on Cholesterol since his diagnosis last September at age 3 and a half. The cholesterol is making a huge difference to him. I have had a few battles to get his medication as politics, it appears, is higher on the list than the welfare of the child. Thankfully we have the Health Service which is free for us, but if you live in a country where you have to have health insurance, it must be so difficult.
    Lots of love to you all,
    Lucy Solomon xxx

  3. El Macero Pharmacy is wonderful! I'm glad they stepped in to help and I hope their work is successful for you and Jukie. It shouldn't be this hard.

  4. Wonderful blog and my heart is twisting because we face similar battles almost every week with other aspects of Jorja's care because for some its just too hard. You truly are an inspiration to me Kate, keep up the great work (of course you will!).

  5. It is good to hear that you found someone willing to assist! I feel a bit of connection with your comment "the condescendingly “helpful” parenting tips from parents of kids without the challenges our kids face." Since Ian was diagnosed with rheumatoid arthritis we have had to face lots of "helpful" people who tell us that he just needs to eat right and exercise and all will be well. As if in the three years we have been dealing with his illness that never occurred to us. I hope I am never one of those "helpful" people.