Speak Now for Kids in Health Reform Campaign

Note: This is not a post about saving money, but it covers the main reason why I started using coupons and finding other ways to save money. Health care is a big expense for many people, so I am participating in this campaign to urge Congress to include children’s health in the current health reform discussions. A child’s health not only affect the child, but also his/her parents who have to miss work to care for the child when he/she is sick. Please continuing reading if this topic is important to you.

Many of you may have already heard about the Speak Now for Kids in Health Reform Campaign. There was a launch party on Twitter and the Momfluence blog network has been talking about it.

The campaign is sponsored by the National Association of Children’s Hospitals and partners and supporting organizations include the American Academy of Pediatrics, the March of Dimes, Children’s Health Fund, Children’s Defense Fund, and First Focus.

I have wanted to write a blog for a few weeks now to contribute to this campaign, but have had a difficult time trying to decide what to say. I have a lot I can write.

For those who are not familiar with it, the Speak Now for Kids Campaign is working to spread awareness that kids need a voice in the current health care reform discussions. Amy at Resourceful Mommy summed up the campaign very well when she emailed me that:

“The one and only goal of the campaign is for children’s health care issues to be included in whatever health care reform is passed. There is no policy stance involved – universal health care, etc. It is simply that children’s health care should be involved in the discussion. There was a policy round table in March with a Congressional subcommittee and no children’s health groups were invited. In fact, the majority of the discussion focused on Medicare. What NACH and related groups would like is for Congress to get the message that their constituents believe that children need to be a part of the equation as well.”

Seriously? No children’s health groups were invited to the policy round table? I would like to know why. Children are the future of our country, and there seems to be an unusually high number of childhood diseases popping up around us. So why wouldn’t children have a voice? If this frustrates you as much as it does me, please get involved:

1) Read the facts here (PDF)

2) Join the Speak Now for Kids Facebook Cause Page.

3) Follow @SpeakNowforKids on Twitter and tweet about this issue.

4) Be a champion for children’s health. Post your story on the Speak Now for Kids Website, which will also go to Congress.

My Family’s Story

My 4 1/2 year old daughter has acquired several chronic illnesses in her short life:

FIRST: A life-threatening allergy to peanuts and tree nuts. We have no history of food allergies in our family so it came as a complete surprise when, on her second exposure to a peanut butter and jelly sandwich, she had an anaphylactic reaction (there was no reaction to the first PB&J sandwich that she had eaten a few weeks earlier).

SECOND: She developed asthma (often found in children with food allergies) and environmental allergies.

THIRD: Just prior to her second birthday, she stopped walking, couldn’t bend her knees or elbows, started vomiting, ran a 104+ temperature and did not want to be held. We rushed her to the ER and she was admitted and quarantined for four days while they ran all sorts of tests to find out what was happening to her. She was finally diagnosed with pauci-articular juvenile arthritis which became pauci-articular extended juvenile arthritis when more joints became affected a year ago this month during another flare that was triggered by a stomach virus. We are fortunate the diagnosis was made so quickly. Some children go years before anyone figures it out and their joints are destroyed without the treatment.

FOURTH: In September 2008, she developed iritis – an inflammation of her iris that is associated with a small percentage of children who have juvenile arthritis. If left untreated, it can lead to blindness, which is why she had been seeing a pediatric ophthalmologist every three months before her diagnosis. We thought the iritis was finally under control with her new medications only to learn at her check-up last week that the iritis is back. I’m not sure yet what this means for her treatment routine. We’ll find out in a few weeks once we see how effective the eye drops are.

We’ve been told my daughter’s health issues will likely be with her for the rest of her life.

There are no cures for her diseases – just some treatments that may or may not allow her to live a relatively normal life depending on whether her body responds to the medications. There aren’t too many medication options left, but hopefully new options will be available before we run out. What’s scary is we don’t know the source of any of these illnesses, and because of her compromised immune system, the door is wide open for future illnesses.

We are fortunate to have health insurance, but our insurance does not consider juvenile arthritis medications as preventive so we pay the full $1500/month for two shots of Humira until our high deductible is reached. Once we meet the deductible, the insurance will only cover a small percentage of the medication. And that’s just the one medication. Add up all her medications (8-9 of them depending on the iritis), and we’re shelling out a few thousand a month just on medications.

Next add in the appointments to see various specialists on a regular basis, as well as frequent visits to the pediatrician to make sure that yet another upper respiratory infection is not one of the life-threatening side effects of Humira. As you can see, it quickly becomes very costly, even with insurance, to care for a child with chronic illnesses. I don’t know what parents do that cannot afford the treatments. See why I’m “craving the savings”? The money I save is re-directed to my daughter’s health care costs.

There are so many issues that affect children’s health care that I am unable to comprehend why no children’s health representatives were included in the health reform discussions. If anyone can answer this question, please leave a comment below because I’d really like an answer.

Here are just some of the issues I see that affect our children’s health care:

> Shortage of pediatric specialists
There is a critical shortage of pediatric rheumatologists in the U.S. because medical students either can’t or don’t want to dedicate the additional money and time to seek a specialization. We just learned this week that my daughter’s pediatric rheumatologist is retiring in June leaving only ONE pediatric rheumatologist in North Texas and FOUR in the entire state – though I also just learned three to four fellows now at working in the Arthritis Clinic. Many states don’t even have a pediatric rheumatologist! Many families must travel for several hours by car or plane to get their child adequate treatment.

> Need a better understanding of pediatric illnesses.
Just because a medication works for adults does not mean it’s the best option for a child. Yet we are pumping our children with medications that have been deemed safe for adults but haven’t been adequately studied in children. Don’t get me wrong… I am glad there are treatments available. Just one to two decades ago, children with juvenile arthritis were not given many options and many ended up permanently disabled. But I do want to make sure that research continues and we look for causes, not just bandage treatments.

> Creation and maintenance of pediatric illness registries.
The chair of the Juvenile Arthritis Leadership Group at the Arthritis Foundation (and a father of a young adult who has suffered with juvenile arthritis most of her life) was in Washington, DC on May 12 to urge the FDA to develop a Consolidated Pediatric Rheumatology Observational Registry so that we can look for common threads in the 300,000+ children with rheumatic diseases and hopefully find a cure. You can read his remarks here.

> The need for a Children’s Health Advisor in the United States.
Other developed countries have a Children’s Health Advisor according to Robyn O’Brien who appeared on the Today Show on May 6, 2009. Why doesn’t the United States have one? Robyn O’Brien also mentions that the FDA allows additives in our food supply that other countries have banned until the additives are found to be dangerous. Why is this?

There are numerous other reasons why children’s health must have a place at the table when our government discusses health reform. Please join me as I speak now for children. Let Congress know why this issue is important to you.

2 Responses to “Speak Now for Kids in Health Reform Campaign”

  1. May 13th, 2009 at 5:44 am

    Charlene says:

    What a well written, informative post–thank you for the information.

    So sorry to hear about your daughter’s health issues, I know it’s difficult for anyone dealing with a chronic illness, but it has to be worse when it’s your child.

    Thanks Charlene. ~ Susan

    # 1
  2. May 13th, 2009 at 6:34 pm

    Heather White says:


    You are right, children are our future. It is very important to make sure pediatrics are part of healthcare reform.

    It’s not just about money (insurance coverage, etc) but, as you point out, it’s an end-to-end, comprehensive inclusion of pediatrics in all areas of healthcare that is needed, from research and testing to care and medication delivery.

    The adult/child medication issue is a very good example. There are many more, like requiring at least 1 pediatrician to be on duty at all times in hospital emergency rooms like they do in other countries, etc.

    Another example, on the ‘medication delivery’ side, is the need for qualified oversight of prescription preparation or medication pre-packaging. Who hasn’t been worried about giving their child medication after seeing how some prescriptions were ‘casually’ being filled by aids in pharmacies of various drugstore or supermarket chains? In many countries medication is dosed, packaged and sealed by the pharma. company, limiting the chances of mistakes and contamination at the local drugstore. Children are the most vulnerable in case of dosage errors or contamination and being proactive in limiting the risk of such occurrences should also be part of the discussion.

    There is a lot to say about this wonderful initiative and this is just a comment area, so I’ll stop here. I’ll be joining you in this effort 🙂


    Thank you Heather! ~Susan

    # 2

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