Sandy Bulcher

So much has happened this past year in terms of legislation for insurance coverage of formula that I hardly know where to start. I suppose I should start with a little history.

Two years ago, metabolic families (primarily PKU) from across Ohio met to discuss introducing legislation that would require insurance companies to cover the cost of formulas and low protein foods.This was prompted by concern over decreased coverage of formula by the state and the ongoing expenses of paying for low protein foods. (Currently in Ohio all children and adults with PKU receive all of their formula free regardless of income. There is no state program for MSUD or other metabolic formulas.)

We metabolic families formed a group called the Ohio Coalition for PKU and Allied Disorders. Our first goal was to locate other families interested in our mission.We accomplished this by encouraging metabolic centers across Ohio to send out information about our group and its goals. Many families responded and expressed interest. Next we held several meetings to discuss how to approach the legislative process. A PKU family from the Dayton, Ohio area who had worked on Missouri legislation for formula coverage, proved to be a valuable resource. We developed a questionnaire and sent it out to all interested families. The goal of the questionnaire was to gather data about the metabolic families which could be used to support our case. We were in the process of gathering this data when, surprisingly, we learned that formula legislation had already been introduced.

My husband, Dave, was coming home from work one day last March of 1999 when he heard on the radio about the Bogan family fromDayton, Ohio and their plight to require their insurance company to cover the cost of their daughter Kaitlynn's formula. Kaitlynn Bogan was born severely allergic to food. She was diagnosed at six months with MSPI (milk, soy, protein intolerance).Kaitlynn had reacted severely to many different formulas and food. Her reactions included severe abdominal pain, vomiting, diarrhea, rectal bleeding, skin rashes, and blisters. It was determined that the only formula Kaitlynn was able to tolerate was Neocate Infant Formula by SHS at a cost of $1,200 per month. The Bogan family, like so many of us, assumed that their insurance provider would cover the cost of Kaitlynn's formula - but they did not.

The Bogans eventually approached their local legislator, Representative Gene Krebs, who agreed to introduce a bill that would mandate insurance coverage of the formula.

I met with Representative Krebs in April of 1999 and encouraged him to broaden the language of House Bill 218 (the Bogan Baby Bill) to include metabolic formulas - low protein food is not included in this Bill. That is exactly what happened; he included the metabolic formulas. Little did I know then how far this journey would take me.

The Bill was initially introduced for consideration into the House Insurance Committee. Kaitlynn's mother, Lydia, provided powerful testimony about the severity of Kaitlynn's allergies, the expense of the formula, and the financial toll that it had taken on their family.

No insurance company testified against the Bill at these hearings; however, the Ohio Chamber Of Commerce did. The Chamber's goal is to protect the small businessman from rising insurance costs, which could potentially occur from the passage of a mandate. Incidentally, it was determined that our Bill would cause an increase of approximately one cent per year on the average family's insurance policy.

Thankfully HB 218 passed the House Insurance Committee by a large margin, 16 to 4. We were thrilled and believed naively that this process wouldn't be so tough after all.The next step would be a vote from the full House.

We soon learned that the Bill needed the approval of the Rules and Reference Committee. This Committee decides which bills move to the full House for a vote.The residing chairperson of this committee and current Speaker of The House is Jo Ann Davidson.

Lydia Bogan and I called many families from across Ohio whose children drink special formulas, and encouraged them to call Speaker Davidson's office and express their support of House Bill 218. Within two days, her office received over 500 phone calls. We learned later that this many inquiries about one bill is very unusual. Still, the Bill did not move to the full House.

Through the summer of 1999, while the legislators were in recess, Representative Krebs held several meetings with key parents to develop strategies to move the Bill on to the full House for a vote. Also during the summer months, I created a data base of parents and interested professionals so that I could easily communicate via e-mail. Many families contacted their local legislators and informed them about HB 218.We also wrote letters to the Ohio Chamber of Commerce and several other business organizations who continued to express opposition to the Bill.

Fall arrived and we held a rally at the Ohio State House in Columbus. Families with children with severe food allergies, malabsorption syndrome, and metabolic disorders attended, as well as several PKU adults. After the rally, families met with legislators to educate them about the Bill. The rally received coverage from radio, TV, and newspapers. The public response was overwhelmingly in support of this Bill.Still the Rules and Reference Committee refused to move HB 218 to the full House. It seemed there was always "bigger and more important" issues the legislators were attending to.

In November, I met with Speaker Davidson regarding House Bill 218. It was a valuable meeting. She learned the "human" side of the story. I was able to educate her about MSUD and how vitally important the formula is to keep Jordan healthy.

During the fall and winter months, Lydia Bogan began her quest for more media attention on House Bill 218. She contacted many national programs. The interest was overwhelming. We also decided that it was time to name our group.After some deliberation, we decided on MAMA (Mothers Aligned for Medical Advocacy). It has proven to be a good choice, as it is easy to remember and recognize.

During the fall, we were contacted by a group of high school students interested in our Bill. Led by Representative Kreb's daughter, Alania Krebs, this group developed a web site to educate persons about the Bill and they continue to hold fundraisers to help families who can't afford life saving formulas. We were touched by their generosity and sensitivity to our issue.

We were hopeful that the House would vote on our Bill after the holidays. Still the Rules and Reference Committee did not move the Bill. Lydia Bogan decided to take our issue to a higher level. In January of this year, she contacted the campaign managers of the presidential candidates and began educating them about HB 218. Quite honestly, I never expected them to be very interested, but I was wrong.

During the month of February, when the presidential candidates were campaigning in Ohio for the Primaries, we were able to talk with all of them regarding our Bill. Lydia talked on the phone to Bill Bradley about HB 218 and part of her conversation aired on local TV. Several mothers spoke to Vice President Al Gore at a rally in Dayton, Ohio. Four families attended a McCain Town Hall Meeting where Lydia had the opportunity to discuss HB 218. Lydia met personally with Pat Buchanan and shared her concern about the lack of insurance coverage of special formulas.

In late February, five families from the MAMA organization met privately with Governor George W. Bush. He, like the other candidates, expressed his support for our Bill. That day Governor Bush spoke with Ohio Governor Bob Taft and the Speaker of the House JoAnn Davidson, and encouraged them to move this Bill forward. Most recently, several mothers received personal invitations to attend a Gore Town Hall Meeting. Following the meeting, we approached Vice President Al Gore about the Bill. As soon as we mentioned "formula," he replied, "Oh yes, the Bogan Baby Bill."

Clearly this issue has received more interest and attention than I ever dreamed possible, largely because of the persistence of Lydia Bogan. The need for federal legislation to mandate insurance coverage of special formulas is real, and the next President of the U.S. will be well aware of that. Incidentally, the MAMA organization is a non-political group. We are seeking support of this issue from both the Democratic and Republican Party.

Lydia's quest for media attention for our Bill continued, and in March, CNN ran a story about the Bogan family. As I write this, the Rules and Reference Committee still has not moved HB 218. I feel confident, however, that the MAMA group has made a difference, and the legislators are well aware of how important this issue is to us.

I believe that we will see the Bogan Baby Bill become law before the year is over. Then we plan to use that momentum to take us straight to Washington D.C. for federal legislation that would require insurance coverage of special formulas.

Update May 21:

Unfortunately, because of pressure from the opposition, Speaker Davidson has decided not to move the Ohio formula Bill through the House during this session. This means we have to start all over again.

While I am discouraged about this, I remain optimistic that the MAMA organization has made a HUGE impact, and the second time around will be easier. We have term limits in Ohio which means many legislators have completed their terms, and new persons will be elected in November. We will have a new Speaker of the House, who is well-educated about this Bill and more supportative. In addition, we will need to find a new sponsor for HB 218 because Representative Krebs will complete his term at the end of this year.

Several legislators have expressed interest already.It has been a long tough process, but I remain confident that the legislators will realize that passing this Bill into law is the right thing to do. The MAMA organization will continue to push for a federal mandate that would require insurance companies to cover the cost of special formulas.

Sandy Bulcher may be contacted by phone: 740-548-4475 or e-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.


The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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