From natural conception to IVF

There are many options for building families today. They include getting pregnant on your own, simple fertility treatments, more sophisticated assisted reproductive technology (ART) procedures such as in vitro fertilization (IVF), intracytoplasmic sperm injection (ICSI), and options such as donor sperm, eggs and embryos, surrogacy and adoption. Modern fertility care can help almost everyone achieve their dream of parenthood.

About 1 in 6 people face fertility challenges. Rising out-of-pocket expenses for health insurance has restricted the options for most lower-paid and middle-class employees who have infertility or other fertility care needs to have a family. This dilemma is magnified for approximately 100,000 people in the U.S. suffering from sickle cell, the vast majority of whom are Black, if they are having difficulty starting a family.

Sickle cell disease is chronic and life-shortening genetic blood disorder that was discovered in 1910 and is caused by a mutation in the gene that produces oxygen-carrying hemoglobin. Red blood cells that become misshapen appear as crescents or sickles under a microscope, which gives the disease its name. When clumped together, these cells clog blood vessels. The result is that they deprive tissues of oxygen, triggering not only extreme pain and hospitalizations, but also damaging organs that can lead to a stroke and even death.

While several drugs have been used to treat this disease, none of them actually target their underlying genetic cause. Stem cell transplants are curative, though matching a donor with immune cells is rare. But medicine is on the cusp of groundbreaking treatments that carry hefty price tags. The Food and Drug Administration approved in early December 2023 two curative drugs that include the first medicine based on gene-editing technology called Casgevy by Vertex Pharmaceuticals and CRISPR Therapeutics, as well as a gene therapy from Bluebird Bio called Lyfgenia.

The issue facing patients who can benefit from the gene therapy is that the associated drugs will make them sterile. However, if women can freeze their eggs (or men their sperm) then they can use these gametes to try to have a baby after the sickle cell disease has been cured by the new gene therapy.

Finding affordable solutions for employees with sickle cell disease

Employers are in a position to help find affordable solutions for delivering family-forming solutions that meet the budget and lifestyle of diverse employee populations. That task includes providing safe fertility care for some individuals battling sickle cell who are left with a gut-wrenching choice—whether to use the new gene therapy that can cure their sickle cell disease but make them infertile, or continue to suffer from sickle cell disease while trying to have a family. However, with fertility benefits, the employee can both be cured by the gene therapy and preserve their fertility if they can freeze their eggs or embryos before the gene therapy.

Financial pressures exacerbate the issue for families that find themselves in this difficult position. Consider, for instance, that few U.S. states mandate coverage for fertility preservation in the event of medical procedures that could undermine a woman's ability to have biological children. Moreover, many of these mandates exempt public insurers – leaving those who are least able to afford the $20,000-plus price tag for fertility preservation to pay out of pocket.

Even if an insurer agreed to cover a costly gene therapy cure, paying for fertility preservation still would be difficult, if not entirely, out of reach for most employees. Factor in another $20,000 to $50,000 for IVF and the cost becomes even more inaccessible. With Black households typically having significantly fewer assets than White households, those with sickle cell disease face enormous financial and emotional difficulties.

While these developments provide hope to those suffering with sickle cell disease, they are unattainable without some sort of financial assistance. Benefits covering fertility procedures such as egg freezing, IVF, sperm banking and tissue freezing can help ease the minds of those needing to choose between a cure for sickle cell and infertility.

Related: Why family-building benefits are necessary for modern employer coverage

IVF also can be used as a powerful disease-prevention tool by identifying certain risk factors, which can save money. Along with pre-implantation genetic testing for the sickle cell gene, IVF with preimplantation genetic testing for monogenic disease (PGT-M) can help families select embryos that are not affected by disease. This strategy will work unless both gamete sources (e.g., heterosexual male and female) have sickle cell disease, in which case all children will inherit the condition. However, if only one person has the trait or the disease, then unaffected embryos can be identified. An embryo that is unaffected or just carries one gene can be transferred, so the baby may have no disease or sickle trait, respectively, but not the disease.

At a time of mounting pressure to land top talent, employers that embrace the ever-expanding definition of family and increasing importance of DEI and health equity will secure a competitive leg up. Finding affordable family-forming programs for certain vulnerable or under-served employee populations represents an opportunity for brokers and advisors to be more strategic about serving their employer clients.

David Adamson, M.D., Founder and CEO at ARC Fertility.