South Dakota Covers Neocate Due to Grassroots Efforts of Parents! [Part 2]

Posted 5.28.10 | Guest Blogger

Our post today is a special 2 part guest blog entry from Brenda Eich. Brenda was instrumental in getting several insurance companies in South Dakota to sign an agreement guaranteeing coverage of amino acid-based formulas. We would like to thank her for sharing her story with us. This is the second part of her story.

Check out the first part of Brenda Eich's amazing journey to get medical insurance coverage for amino acid-based formulas in South Dakota.

Working with South Dakota's State Legislature

I asked an old freiend who is an attorney who I should reach out to. He gave me the name of our South Dakota State Representative - and actually the gentleman who represents my district! I met with our (wonderful) South Dakota State Representative, Todd Schlekeway. I asked him to come to our house and I showed him printed out information from Children's Magic. He was intrigued by a few things. One: that Medicaid and WIC covered Neocate; two: that it was medically-necessary; and three: it is needed by only a fraction of children so the cost to the insurance company would be minimal.

Representative Schlekeway left our house with a packet of information to read. I started a grassroots effort. I appeared on our local KELOLAND television station over the dinner hour. It didn't take much to get a following. People are very interested in children's issues. I told our personal story of allergies and medically-necessary Neocate -- and no insurance coverage but (hopeful) coverage with my new friend, Representative Schlekeway. The story was also online and gave a link to my email. I started to receive many emails! I started a spread sheet to keep the names, child's name and age, insurance company, email and address in one place. My database grew to around 30-35 families.

Initial Roadblocks Didn't Stop Us!

We began to meet as a Food Allergy Group at the local hospital and our meetings quickly turned into a "How can we get a law passed?" group. The hospital actually denied our meeting at their facility - but it didn't stop us or some of the doctors who supported our efforts. We met at a community center!

Representative Schlekeway and I tweaked our bill several times (with the help of several GI doctors and an insurance company) until we had just the right wording. It was give and take but I wasn't going to rest until it covered what these children needed. It was several weeks until he needed to introduce the bill into legislation, but it became huge leverage for us. Representative Schlekeway continued to say that we needed to educate our representatives and senators so we would get better results. He spent hours meeting with insurance companies and educated them on food allergies and this medically necessary product - Neocate.

In the meantime, I kept in close contact with Representative Schlekeway.  He asked several times for our group to send out emails to the representatives or senators or both groups. We wrote heartfelt stories with pictures of our little ones attached to the email. We told of how our children desperately needed this medically necessary product and how it wasn't covered by insurance. One gal who worked for the state talked about quitting her job so that she could get it covered by WIC, but in the long run decided to keep the job she loved and pays for Neocate out of pocket.

Finally! Some Progress with Insurance Coverage for Neocate

One day Representative Schlekeway called and had just left a meeting with my insurance company, and they unanimously agreed to cover Neocate for their insurers! This was the insurance my family had!!  Neocate would be covered forour little guy!! It brings tears and a big lump in my throat as I type.  It was such an overwhelming phone call.  Years of Neocate and finally, it was going to be covered by our insurance company! They really believed it was medically necessary and needed to be covered. God is good. 

That insurance company was then instrumental in getting other insurance companies to cover Neocate also. You see, the word got out and I was then on three different television stations and in our local newspaper.  While I didn't list the insurance companies who didn't cover Neocate, it was still bad publicity for them.The insurance companies ultimately said they wished to have a statewide agreement instead of a mandate (law).  So, the days ticked by and our group sent heartfelt emails again to our legislature. The word began to spread like wildfire! People without children even knew what Neocate was! It was such an exciting time.

Day after day, Representative Schlekeway would call with updates about insurance companies.Those that agreed would send him an agreement that the state of South Dakota would then keep on file.

The Medical Insurance Companies Jumped on Board with Our Efforts

We now have the top six South Dakota insurance companies covering Neocate. Two of them covered it immediately. One of them won't begin until January of 2011.Three of them will begin coverage on July1, 2010. We were a bit disappointed about the delay of coverage, but there has to be a start date.  Representative Schlekeway is now contacting the last two insurance companies in SD who don't cover Neocate.  We are hopeful they will begin coverage also.  The deadline for filing a bill has come and gone so that leverage is gone, but we have the other insurance companies doing the right thing.

In the beginning I set out to get coverage for my family.  When our insurance company agreed to cover our Neocate, I could have stopped and let our group plead to their own cases to their insurance companies with Representative Schelekeway.  But, I was too involved with these other families and little children.

I was asked if I would do it again. It was a lot of work, but the work I did was for our little South Dakota children who can't stand up for themselves. I have to give most of the credit to Representative Schlekeway.  Without his contacts and passion for our issue, we wouldn't have gotten to first base. (For years I wrote letters and was denied.)

My Inspiration is Helping Out Little People

It is such a wonderful feeling knowing that our little people will have the insurance coverage they need! May those of you who live in a state where Neocate is not covered, be bold and stand upto your insurance companies. Find a state senator or representative who will help you contact insurance companies and learn the lingo. Start by gathering names of food allergy families. Contact a senator or representative who will guide you and plead your case. You can do it!

I hope the following Bible passages will inspire you like they inspired me. Our pursuit in South Dakota wasn't difficult. It was a bit time-consuming on certain days. It was frustrating some days. It became my passion. In the long run, it was the most rewarding thing I have ever done.

"And if anyone gives even a cup of cold water to one of these little ones because he is my disciple, I tell you the truth, he will certainly not lose his reward." Matthew 10:42

"The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.'Matthew 25:40

- Brenda Eich

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About Us

Food Allergy Living is a resource for parents of children with food allergies, brought to you by Nutricia, the makers of Neocate. For more in-depth information about our purpose & authors, see our About Food Allergy Living page.