Coverage for Special Formulas

By Epstein, Richard | The Exceptional Parent, November 1995 | Go to article overview

Coverage for Special Formulas


Epstein, Richard, The Exceptional Parent


Q Our four-year-old daughter has Opitz syndrome, Turner syndrome and a multitude of medical problems. She has never eaten food; she has always been on a special formula.

Since the age of 10 months, she has been fed by gastrostomy-tube. Our private insurer covered the pump and home care supplies, but not the formula. The company told us they never pay for "nutritional or dietary supplements." We contended that this formula is in no way a "supplement" - in fact, it is the only nutrient that keeps our daughter alive - but the insurer would not pay for the formula.

We're still with the same insurance company, but we've changed policies. Once more, I tried to get the formula covered, only to be told again that they never pay for it. I asked the company why they pay for home IVs but not formulas, since both help keep people alive. Their response was to ask if my daughter could be placed on an IV!

After the first few years of paying for our daughter's formula, we were very much in debt. Then we applied for Medicaid for her. Once she qualified, Medicaid covered her formula and has done so ever since.

We pay for our private insurance policy through my husband's employment. We do not want Medicaid to pay for our daughter's extremely expensive formula. We believe our private insurer, our primary insurer, should pay for this formula.

I believe that Medicaid monies should go to people without any other insurance. I am appalled that approximately $21,000 of taxpayers money is spent on my daughter's formula every year. Representatives of our private insurance company do not understand this reasoning; they seem to think we should not be bothering them since Medicaid is covering the formula.

This battle will be tough, but we feel we are doing the right I've written to our senator, and I've filed a complaint with our state insurance commission. What other steps can I take to change the rules and regulations?

A This battle will be tough, but it will also be worthwhile. Many people with children who require special formulas on a daily basis may not be able to qualify for Medicaid. As you know, the economic burden of paying for formula can be difficult to bear. In addition, the government plans to reduce spending for the Medicaid program.

Although you've filed a complaint with the state insurance commission, they are unlikely to deal with this issue. State insurance commissions have the power to require an insurer to follow existing regulations, but they do not generally issue new rules.

The state legislature, however, has the authority to pass laws requiring insurers to pay for specific treatments. Over the last few years, a number of states have considered, and in some cases enacted, new laws requiring private insurers to pay for everything from routine medical tests, to diabetes-related supplies and equipment, to bone-marrow treatments. …

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