Today, I had the opportunity to give public testimony in front of the Oregon Health Authority's Value-based Benefits Subcommittee (VbBS) in favor of coverage of expanded carrier screening for Medicaid recipients. Unfortunately, the VbBS decided not to move forward with coverage. Nonetheless, I will continue to advocate for all women to have access to expanded carrier screening regardless of their socioeconomic background.
Good morning, everyone. My name is Taylor Kane, I am a carrier of a rare, X-linked genetic disorder called Adrenoleukodystrophy, or ALD for short. My family learned that I was a carrier when my dad was diagnosed with ALD in 2001, when I was three years old. For the next three years, my mom, my little brother and I watched as my dad lost his ability to walk, talk, swallow, and eventually recognize who we were. He passed away when I was in kindergarten.
Because ALD is an X-linked disease, like Fragile X syndrome, a male with the condition passes the defective gene down to any daughters he has -- therefore, I am known as an obligate carrier of the disease. Any children I have will have a 50-50 chance of inheriting my defective X-chromosome. I’ve known I was a carrier for as long as I can remember -- my mom told me when I was in grade school -- and I can confidently say this information has not hindered me in any way, shape, or form. Rather, it has empowered me to make educated decisions about my future.
Carriers of genetic conditions have long faced obstacles when it comes to obtaining the information necessary to protect themselves and their future children, including a lack of information about, and access to genetic testing and reproductive options that could enable them to avoid passing down an incurable or deadly disease. With X-linked diseases, where carriers are not really “just carriers” and may themselves develop significant and disabling symptoms, women often face barriers to obtaining informed and knowledgeable medical care.
In light of these issues, in 2017, I founded Remember The Girls, a global, nonprofit organization dedicated to educating, supporting and advocating for female carriers of X-linked conditions. As the leader of our organization, which has to-date served over 1,000 carriers around the world, including a number of carriers residing in Oregon, I can tell you that we are incredibly passionate about all women having access to expanded carrier screening, regardless of their income level or source of insurance. Indeed, the overwhelming majority of carriers in our group, who have unfortunately found out their carrier status after having a child that was diagnosed with a genetic disease, wish they knew of their carrier status earlier so they could have made informed decisions about their reproductive choices and be more prepared for the future.
There is a long-standing assumption that genetic information is overly complicated, and that learning of one's carrier status is overwhelming and frightening -- particularly when that person is a woman. While it is true that no one wants to learn that they carry a genetic disease, it is far better than what might be the alternative -- unknowingly passing that disease on and watching your child suffer or die as a result. In addition to the emotional toll of that prospect, the financial implications of raising a child who may require multiple surgeries, a bone marrow transplant, gene therapy, or round-the-clock medical care may be similarly harrowing.
The Oregon Health Authority has committed to improving health equity within the state. Women on Medicaid deserve to have the ability to learn whether they carry a debilitating or deadly genetic disease and appropriately plan for their future. There already exist massive disparities when it comes to access to genetic testing for women of certain demographic groups, including women in lower socio-economic classes and non-white women. This is especially pertinent in Oregon since 58% of those on Medicaid do not identify as white.
There is current technology that makes the genetic landscape more equitable and helps women and their partners understand their potential carrier risk and their options if they are identified as a genetic carrier. There are also a plethora of online resources, including Remember The Girls, that help educate carriers about family planning options.
To conclude, I would urge you to take action to make expanded carrier screening available to women on Medicaid in Oregon. To carriers like me, knowledge is power.
For more information on expanded carrier screening, check out the Access to Expanded Carrier Screening Coalition.