Then they tried to have a second child, which took one failed embryo transfer, another failed transfer, surgeries to examine why those transfers failed, a failed egg retrieval, another successful egg retrieval, and a transfer with a single healthy embryo, before she finally got pregnant. “It was honestly the most horrendous experience of my life, and it nearly destroyed me,” Faye says. After each failed procedure, she found it difficult to work. There were times, she admits, when she thought about how she might not have to go through all this if only her husband would get tested. “When I was very low, I didn’t even know I needed to do that. When those emotions settled, I still came back to protecting him, protecting me, protecting the family. You don’t need to know this.”
In the U.K., the National Health Service provides people at risk for Huntington’s disease with up to three rounds of IVF to have one healthy child. After Faye and her husband had their son, though, they had to pay out of pocket to conceive their second child. “She was my £33,000 baby,” says Faye. They could afford the cost, the equivalent of about $45,000, for multiple rounds of IVF. But most people cannot.
Read: Grieving parents are turning to posthumous IVF
In the United States, most insurance does not cover the cost of IVF with any kind of Huntington’s testing, which together run on average $20,000 to $25,000. The HelpCureHD Foundation recently announced grants for parents who want the procedure but cannot afford it. The foundation’s founders, Allie LaForce and Joe Smith, revealed that they were going through IVF with indirect nondisclosure testing to have children. (LaForce is an NBA reporter for TNT, and Smith is a pitcher for the Houston Astros.) When I called her, LaForce was going through her second round of IVF. She had been traveling around the country for work with hormone injections in tow.
The couple was shocked when they discovered the cost of IVF with a Huntington’s test. “We could afford it,” said LaForce, “but no wonder nobody does it.” They hope to fund five families a year, and the foundation has also partnered with the Cleveland Clinic and the Houston Fertility Institute for discounted treatment. The foundation will fund any type of PGT-M for Huntington’s—disclosure, direct nondisclosure, or indirect nondisclosure—though LaForce and Smith themselves chose indirect nondisclosure testing.
They chose that option because Smith has never taken the Huntington’s test himself. He had seen how Huntington’s disease had taken over his mother’s life. When she could still go to his games, people would accuse her of being drunk because of her slurred speech. She now lives at a full-time care facility. “He just has watched his mom struggle,” said LaForce, “and I think it’s hard for him to imagine that is his life 10 to 15 years from now.” They don’t know whether their children will have to watch Smith struggle, but they do know that with IVF and preimplantation testing, their children will never have to imagine Huntington’s disease taking over their own lives.