Food Allergy Living Blog Tagged Results

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

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 part 1 of her 2 part story.

The Initial Food Allergy Diagnosis

You have just left the doctor's office with your infant in your arms. Now you have those doctor's words circling in your mind. "Your child has multiple food allergies and will need a special amino acid-based formula like Neocate. You can't feed your child anything that has milk, soy, oats, citrus, wheat or nuts in it. Start reading labels with a microscope. "If you are lucky, you are only avoiding two or three foods. For most children with protein intolerances, IGG or IGE allergies, you are avoiding many foods.

The first few years of our little guy's life were really a blur. I spent countless hours in the kitchen trying to make meals out of a short safe-foods list.He was very small (and still is) so my main “job” was to feed him. That sounds a lot easier than it is. Most allergic children have food aversions. We continued to visit the allergist, pediatrician, GI specialist and nutritionist. All of the sudden, this little bundle of joy became a huge job like I have never known (and he is our third child). I am blessed to be a stay-at-home-mom but could it really be THIS hard??

It’s More Than Just Dealing with Food Issues

In addition to the food issues,we also had social issues. Can we really go to church, Bible study, MOPS, storytime and the park where other children are running around with frosting or cheesy crackers on their fingers? Scary! I found myself quarantining ourselves off during this journey. My main goal was to keep him safe while increasing his weight ever ever so slightly each month.

The expenses of Neocate, pediatric doctor's appointments, GI specialist appointments, allergists andmedicine (reflux) were more than we could bear. After several years of purchasing Neocate out of pocket, I started submitting letters to our insurance company. All of them came back with a standard “Request Denied”.

How My Grassroots Effort for Insurance Coverage Started

Then I met a wonderful family who has three boys. Their oldest is five and has eosinophilic esophagitis (EE). He desperately needs Neocate but with no insurance coverage, the cost is too high. His mother actually works for the hospital and the hospital insurance plan wouldn't cover Neocate. This little guy is the tiniest little five year old you have ever seen. It breaks my heart to know that he isn't the only little person who isn't getting the nutrition he needs. Many children who need Neocate don't get nearly enough or don't get it at all.

Then I heard of one family who tube feeds their child because if you tube feed, it is covered by insurance. Unbelievable! They said they hope when he doesn't need Neocate, he can be weaned off tube feeding and not have food aversions. This is just unacceptable. Neocate needs to be covered by insurance.

My blood began to boil...

After about three years of dealing with food allergies and purchasing Neocate, I decided to reach out to any others and see if they were receiving insurance coverage. We have a website where moms meet in our local area. I got back two responses from other moms who were purchasing Neocate for their little food allergy people also.

I chatted with those moms and the more I chatted, the more determined I got!

Stop back for the second half of Brenda Eich’s story about how she started a grassroots campaign to win medical insurance coverage in South Dakota for amino acid-based formulas.

We mentioned earlier this year that a group of families in South Dakota was working to get reimbursement coverage for elemental formulas like Neocate which helps kids of all ages from infants to toddlers. A step has been made in the right direction — several insurance companies in the state have signed a voluntary agreement to reimburse for amino acid-based formula.

The insurers’ agreement to reimburse families for amino acid-based formula includes the following insurance companies:

• Avera Health Plans (effective 7/1/2010)
• HealthPartners (effective 4/1/2010)
• Medica (effective 4/1/2010)
• South Dakota State Employee Health Plan (effective 7/1/2010)
• Wellmark BlueCross BlueShield (effective 7/1/2010)

The specific conditions for which amino acid-based formulas are covered varies by plan. Be sure to check with your insurance company for details about their specific policy and when it goes into effect. Co-pays and other terms will also vary by plan.

If you want to introduce reimbursement legislation in your state, be sure to visit the Children’s MAGIC Web site and download the “Guidebook to Enacting Legislation,” which has everything you need to get started.

Don’t forget to keep us up-to-date on your efforts by posting a comment below, emailing us at foodallergyliving@shsna.com or connecting with us on Facebook or Twitter.

- Sarah

With help from State Representative Todd Schlekeway, a group of families in South Dakota have introduced a new bill that would require insurance companies to cover amino acid-based formulas like Neocate.

Keloland Television in Sioux Falls, South Dakota recently did a story on the bill and shared the story of the Kurtz Family whose two children, Annie and Quincy, both have milk protein allergies. Annie relies on Neocate for the nutrition she needs to survive, and her mother April is eager for the bill to pass so that it can bring some much needed economic relief to her family.

Hopefully South Dakota will pass the bill requiring reimbursement of amino acid-based formulas and join other states like Arizona, Connecticut, Illinois, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Oregon, Rhode Island and Texas, which have passed similar legislation.

If you are interested in introducing reimbursement legislation in your state, please visit the Children’s MAGIC website and download the "Guidebook to Enacting Legislation," which can help you get started.

- Sarah