Saving the costs of Formulas for Families

In 2014, the Medical Foods Insurance Coverage Act-Medical Foods Insurance Coverage, cost-sharing provisions, regulations, and applicability (Act 158) was amended from the original 1996 bill that forces insurance companies to pay for formulas prescribed by the physician due to a dietary need. This bill was long overdue and I hope to bring more awareness of this bill to the individuals for who this will benefit the most.

For some individuals, this act can save them thousands of dollars and can even save their lives. Without some of these formulas, the individuals become highly at risk for malnutrition and other serious medical issues. This act forces insurance companies to pay for nutritional supplements as they are medically necessary.

So what is a medical food? The Food and Drug Administration (FDA) explains that medical foods are not simply recommended by a physician as part of an overall diet to manage the symptoms or reduce the risk of a disease or condition, but rather are a specially formulated food product for patients who require that product as part of a disease or condition’s dietary management.

So, you might be thinking: why should I care about this….special formula can’t be that expensive right? Wrong. For one case of Neocate Jr, a hypoallergenic formula, it costs $161. One case has four cans and a person can easily drink 1–1.5 cans per day.

I actually have a close friend whose sister was diagnosed with Food Protein-Induced Enterocolitis Syndrome (FPIES) at a young age, which essentially means that she is allergic to the proteins in foods. She is only 13 years old and the only food that she can tolerate is Neocate Jr. This equates to about $60 per day for her to survive.

Thankfully, this act requires that the insurance company pay for the cost of her formula because it is under section 4 part b as an amino acid-based elemental formula that is ordered by a physician for food protein allergies.

This piece of information is extremely important!!

Included in this act, is that these regulations must apply to all insurance policies, as well as renewals of contracts. This means that no matter what kind of insurance plan an individual has, the formula must be covered.

Even if you are not affected by a medical condition that would require this diet, you can still advocate for those who do. You can inform people of this act to prevent insurance companies from trying to get away with not paying the costs of the formula.

In my friend’s instance, there were a few months that went by before they were able to get the food paid for by the insurance company. The insurance companies were not answering the phone calls, and if they did respond, they did not know where to send them next to have their questions answered.

The problem they kept running into was that even though the insurance had to pay for it, some providers refused to give the formula. Their rationale was that because the formula could be given to her sister orally that it was not profitable for them. They essentially wanted her to be further debilitated before providing her with the formula, by saying that it was only profitable for them if she was taking the formula through a feeding tube.

Providers should be required to provide the formula for those in need.

Eventually, they were able to find a provider in Philadelphia that was willing to provide them with the formula, and they deliver it to their house monthly. After talking with my friend about this, she stated that it took them two months to figure this out. So let’s revisit the costs of this formula. This family alone had to spend $3,600 out of pocket to feed their loved one because providers didn’t think it was “profitable.”

Lawmakers need to amend this legislation so that the providers are forced to allow the insurance companies to pay for it.

This amendment can help so many families with the out of pocket costs of medically necessary formulas. This bill is wonderful, and completely necessary, however I do not feel that we are done here. Providers need to be held responsible for this regardless of the amount of profit they will make. It should not matter whether or not the formula is taken orally, or through a feeding tube, because regardless they still need the formula to survive.

Families should not have to suffer financially because a provider will not be making enough profit. And individuals should not have to suffer and starve for this same reason.

I encourage you to speak up about this bill and to inform others that even though it has a great foundation, it can still be modified to help even more people with these kinds of medical conditions. By speaking out about this bill, we can urge lawmakers to make the necessary amendments to Act 158.