HD Free With PGD!

Working with your Insurance company



The cost of PGD can be very expensive. The total expenses include charges for fertility testing, In-Vitro Fertilization, Lab fees, and an extra expense for the PGD test. Most of us have some type of medical insurance plan and we hope that the plan will offer some financial assistance. In some states, medical insurance companies are required to pay for the cost of In-Vitro Fertilization and/or fertility testing. Coverage in other states varies greatly.

My insurance is small and administered by my husband’s union. When I first contacted the plan, I was told that they do not cover IVF, but they do pay for testing if I have been unsuccessful in attempts to get pregnant for 1 year. The truth was that we had never tried to get pregnant. So I asked if there was a manager I could talk to. They connected me with the nurse on staff who assists with claims and special situations. I told her about HD and about PGD and asked if there was any way the medical plan could help us. She said that the plan had helped a couple in a similar situation (not HD) a year ago and maybe I could use the same loophole for coverage. She said that their rules state that IVF is not covered for infertility, but no rule exists for this type of genetic situation, which would actually be in their “major medical” category. I made a good attempt to be friendly with her and through our numerous phone calls she helped me quite a lot. She said that our request for coverage would have to be approved by a 3rd party team of doctors who would deem the request medically necessary or not.

I needed to put together a package of information to send in with my request. I wrote a detailed letter (a copy is below) that explained the situation and respectfully argued that they should help us. I described the symptoms of HD and discussed my particular situation. I computed the possible financial consequences of caring for children with HD. I tried my best to make it impossible for them to say no. I also asked my doctor to write a letter discussing PGD, its success rate and the medical necessity of my case. I then researched HD and PGD and included additional information with my request.

It is important to point out that I had been tested for the HD gene and I included that information in the request. The only reason I felt comfortable doing so is because I had life insurance, long term care & was a member of my medical insurance before being tested. It was a personal decision to reveal the information and was worth the risk to protect my children and get financial assistance doing so. Every situation is different and some who have been tested for HD may not want to reveal the information.

I sent my request in and it was approved by the medical team. However, the plan administrators met later that week and decided to change the rule to state that IVF is not covered under any circumstances. We were notified that they would cover one cycle at 70%. One covered cycle was better than nothing! Lucky for us, we were pregnant after that one try. But this is not the norm and you should know that it can take numerous attempts to get pregnant with IVF/PGD.

Call your insurance and ask to talk to a nurse on staff (if they have one - otherwise ask for a claims manager). Explain your situation & get to know that person - ask for their name and phone number for later communication. You need to find out what your insurance plan’s rules are regarding IVF. If they don't cover IVF, find out whether they think the insurance plan will make an exception for your case because of HD.

Even if your insurance says they do not cover any of this, keep calling and asking whether they can make an exception. Ask if they cover anything – fertility testing? lab fees? PGD? Send a request in writing and find out who is the best person to direct your questions to.

Also, research whether your state mandates coverage. This is a link to a site that lists the states and what they cover:

Here is a copy of the letter we sent to our insurance:

To Whom It May Concern:

My name is Stacy and my husband is a member of your union. We are members of the medical plan and are cautiously planning to begin a healthy family. I am hoping that the medical plan will help us in our responsible efforts.

I am writing to request your approval for coverage of a procedure called in-vitro fertilization with pre-implantation genetic diagnosis. This coverage should fall into the “Major Medical” category. I understand that you have approved coverage for this procedure in the past for other members and I hope that you will have the same consideration for our situation.

My family has a history of Huntington’s Disease (HD). Last spring, I was tested as a precaution before starting a family, and I unfortunately tested positive for HD. My test results showed that I would be close to 60 before the symptoms begin. But that may not be the case for our children if we allow this genetic mutation to be passed on.

Huntington’s Disease (HD) is an inherited progressive and fatal neurological disorder caused by an excessively repeated DNA code sequence. The result of HD in the affected person is brain damage as the cells in the brain die off. This brain damage results in the affected person slowly losing control over most of their motor skills, their cognitive function and emotional/psychological capacities. Each child with a parent that has the HD gene has a 50% chance of inheriting the disease. The age of onset can range from birth to 70. There is no known cure for HD, and there are no clinically proven treatments.

In my immediate family, all who have tested for the HD gene have been positive for the mutation. It is very likely that my children will also inherit this gene if we do not use IVF/PGD. Therefore, this procedure is medically necessary.

Financially, IVF/PGD makes the best sense. The cost of care for a person affected by HD has been estimated at $60,000 per year. At an average span of 15 years from diagnosis to death, that cost is $900,000. If we have 3 children and they each have a 50% chance of inheriting it, then the average cost of care for our children would total $1,350,000 (3x.5x900000). In comparison, the reasonable cost of IVF/PGD is financially the best choice.

This procedure will rule out Huntington’s Disease completely. It has been performed since 1991 and has a 95% success rate. I am enclosing a letter from my doctor, Dr. Lawrence Werlin, which will explain why the procedure is medically necessary for my situation.
For more information about HD, please visit
For more information about IVF/PGD, please visit

Thank you very much for your consideration and for helping us create a healthy family.

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