Having a baby is expensive. But having a baby with the help a fertility clinic may seem out of reach for many couples, even when they are at risk for having a child with a genetic disease. Preimplantation genetic diagnosis (PGD), mostly referred to now as preimplantation genetic testing for monosomic diseases/single-gene disorders (PGT, or more formally PGT-M), utilizes state-of-the-art fertility techniques such as in vitro fertilization, embryo biopsy, and customized genetic testing to implant embryos free from certain disease gene(s).
Prior to the introduction of PGT in 1990, individuals and couples at-risk to have a child with a genetic disease had the options of adoption, egg or sperm donation, or childlessness in order to not pass on the inherited disease. For couples who did want to have a biological child, they could elect to have invasive prenatal diagnosis if they wanted to know whether or not the baby inherited the genetic disorder. If the baby was found to be affected, they could chose to terminate the pregnancy or could use the information to better prepare for the child’s medical needs.
While all of those options are available to couples today, PGT is the only method that can provide couples with an unaffected, genetically related child prior to conception. Yes, PGT is a complicated and expensive process, but many at-risk couples will explore the financial feasibility of PGT when made aware of the procedure.
- A questionnaire-based study of 245 carriers of autosomal recessive disorders found that there was a 30% preference of PGT over prenatal diagnosis, adoption, and egg/sperm donation.
- Another study found that 74% out of 210 couples in their reproductive years with a genetic disorder would prefer PGT over prenatal diagnosis (as long as the waiting list was less than 2 years).
Let’s explore the cost of each procedure, what factors influence the cost, potential for insurance coverage, and other financial assistance available for PGT. Lastly, we will let you know how you can get a free consultation to begin to explore whether or not PGT is a good option for you.
How much does PGT cost?
Most fertility clinics can provide you with an estimate of costs for PGT prior to signing on with them for services. Some may present the cost for PGT in a “package,” but be sure to compare the breakdown of services between fertility clinics to be sure that there aren’t any hidden fees. Ask for some sort of a cost worksheet, which will break down all of the steps of the PGT procedure from pre-cycle services through early pregnancy monitoring with estimated costs or ranges.
Determining the exact cost of having a child via PGT has a lot of variables from patient to patient. All patients who undergo PGT need to utilize in vitro fertilization procedures (IVF) so that we have access to the embryos to biopsy. The goal of PGT is to transfer an embryo or embryos that are not affected by the known inherited genetic condition for which it is at risk. Here are some of the factors that can impact the cost of PGT:
- Number of IVF cycles needed. A clinic should be able to give you an idea of cost per IVF cycle. It may take more than one cycle to get pregnant, however. The number of cycles needed per patient depends on the fertility health of the intended parents, meaning the number of good quality egg and sperm cells available at the time of the retrieval process. The IVF success rate of the clinic is also a factor. Some patients get pregnant with the first embryo transfer, while others may decide to go through a full IVF cycle again starting with egg retrieval if they do not have any embryos left suitable for transfer.
- Number of embryos to biopsy and test. Another factor is the number of embryos available to biopsy to send DNA samples to the laboratory that creates the test for PGT. Some PGT labs charge per group of embryos, while others have per-embryo-pricing. While having more embryos to biopsy/test may add to the cost, having more embryos available will increase the odds of finding healthy embryos and having a successful pregnancy with the first IVF cycle.
- Inheritance pattern of the genetic disease. Some disease genes are “stronger” than other disease genes and can affect more embryos. We have two copies of the 20,000-25,000 genes in the human genome, and inherit one copy from each parent.
- In autosomal dominant conditions, such as Huntington disease, a mutation inherited from one parent will “dominate” the normal copy of the gene. Half of all embryos on average will test positive for an autosomal dominant condition.
- In autosomal recessive conditions, such as cystic fibrosis, a mutation must be inherited from each parent leaving no working copies of the gene. Roughly 25% of embryos will test positive for an autosomal recessive condition.
- Technology required. The PGT laboratory must create a custom test for each patient in order to provide the most accurate results. The cost of the test depends on the disease, the technologies used, and the family structure. Most tests require DNA samples from the couple’s parents or other family members in order to design the test. If those family members aren’t available to provide a sample, other methods can be used, but they can also increase the cost.
To give you an idea of the cost per cycle at ORM, here’s the breakdown:
- Pre-cycle screening fees: $2,500-$6,000
- Fertility medications: $4,000-$8,000
- Basic IVF procedural fees: $15,400
- PGT-related fees*: $6,000-$12,000
*PGT-related fees include testing embryos for extra or missing chromosomes that are not inherited, which is also referred to as PGS, CCS or PGT-A.
If you are traveling from outside of the Portland area, another factor to consider is travel expenses related to in-person visits.
Is PGT covered by insurance?
Outside of the U.S., PGT may be a covered service under a country’s national healthcare system, but is often highly regulated. For example, in the U.K., the Human Fertilization & Embryology Authority licenses certain conditions as suitable for PGT and have other criteria that a couple must meet prior to obtaining funding for PGT through the National Health Service. The majority of European countries restrict the use of PGT services in some way. Thus, couples may need to cover the cost within their own country through other means or to travel to countries such as the U.S. where regulations around PGT are less restrictive.
Historically in the U.S., fertility services have not been covered by insurance. Within the last two years, we have seen a number of patients from larger, well-known companies like Facebook, Intel, Microsoft, Nike, and Adidas have some coverage for their employees.
If you aren’t sure if your insurance plan covers fertility services or PGT specifically, ask your human resources representative. You will also want to explore if your plan specifically covers services for PGT, even if you don’t have infertility. If it doesn’t, you might try to make the argument that it should be a covered benefit. A great resource that we send patients to is RESOLVE: The National Infertility Association, which is a non-profit group with great information on insurance coverage as well as other topics related to fertility.
There aren’t a lot of cost-benefit studies on PGT vs. having a child with special needs. One study published in 2010 describes the cost savings of PGT when used by couples at-risk to have a child with cystic fibrosis, especially for women under the age of 40 years.
What other financial help is there for PGT?
- Financing. Several fertility clinics have relationships with lenders. ORM’s preferred lender is Prosper Healthcare Lending. While the interest rates can range from 3-30%, this lender sends checks directly to patients to use for procedures or medications.
- Donations. We have had a few patients set up a GoFundMe page and document their experience through social media. Other patients receive donations directly from friends, family, or their churches.
- Grants and Scholarships. We do know of some couples who apply for grants, such as through the Baby Quest Foundation. Resolve has a list of other potential opportunities on their website.
- Credit Card. Most of our patients within the last two years have paid for PGT services using a rewards credit card. We’ve seen cards that give points toward airline travel, hotel stays, shopping, or cash back.
Where can I learn more about how I can get PGT services?
A great place to start is by going by visiting our fertility center’s website and connecting with us via email or phone. Our New Patient Coordinators can give you an overview of the process, and a Financial Coordinator can provide you will a free quote for PGT services. If you have scientific questions related to your situation, please contact us at firstname.lastname@example.org. We have a great team of people to help you make an informed decision on whether or not PGT is right for you.
Leslie is a board-certified clinical genetic counselor and former Program Manager for the preimplantation genetic testing (PGT) program of the ORM Genomics team and former Project Manager for SharingHealthyGenes.com. She completed her Bachelor’s degree at DePauw University and her Master’s degree in Genetic Counseling at the University of Texas Graduate School of Biomedical Sciences at Houston. Since graduating in 2000, she has worked as a clinical genetic counselor in several specialties including prenatal, pediatric and cancer genetics and has been very involved with the National Society of Genetic Counselors.