From Insurance to Intimacy: The Pitfalls of Knowing the Truth

When I found out that I was the carrier of a fatal gene that causes FTD and ALS, there were lots of things I had to navigate. While I didn’t have to modify my house with grab-bars and ramps yet, I still had to manage communicating with others about what it meant to carry the C9orf72 genetic mutation. In fact, I remember shortly after I found out that I was positive for the C9 expansion, I ran into a friend. He knew that my mom was sick, and that I’d been jetting back and forth from San Francisco to Ft. Myers, Florida to visit her. I was walking my dog, Dusty, near the open space near my home. He was walking his dog, too. After our four-leggeds became friends, he asked me what was new. I’ve always been a straight shooter, so I told him that I’d just found out that I carried the same gene that caused my mom’s ALS.

“What am I supposed to do with that information?” he asked, as if accusing me of telling him the truth. I was dumbfounded. I thought that he’d at least ask how I felt. Or ask how he could help. So, I said, “Nothing, I guess.”

In that moment, I realized that when someone asks you how you are, or what’s new, sometimes they really don’t want to know. They don’t have the emotional bandwidth. It’s just too hard for some people to handle intimacy on this level. Since that encounter seven years ago, I’ve become pretty adept at gauging people’s interest and tolerance for my medical drama.

I also have family members on my mother’s side who don’t want to talk about the fact that they may be genetic carriers of C9. As an activist, it absolutely blows my mind that anyone with a possible genetic risk wouldn’t want to know whether they can pass a fatal disease down to their kids. It seems irresponsible to me that anyone would bring children into the world when they know that those kids could develop ALS or FTD. In fact, the only people on my mom’s side who have tested for the C9 expansion are my brother, my aunt, and me. And it was like pulling teeth to get my aunt and brother to consent to testing. I spent two years trying to convince each of them to do it. Because my cousins and second cousins won’t get tested, there are more than 30 people on my mom’s side of the family who are at risk of developing FTD and ALS. And that doesn’t even count future generations.  I can go on and on about how testing leads to enrollment in clinical trials, and that clinical trials lead to a cure, but what’s the point? Should I risk my relationships with my loved ones because I’m the only one who’s an activist? 

Most of my friends, especially those in my ALS community, are able to talk freely with me, ask questions, and share ideas. I’ve even been surprised and delighted that people who aren’t ALS or FTD community members can meet me in my ALS/FTD space. I’ve had friends travel with me across the country to participate in ALS events. I’ve had unaffected (non-gene carrying) family members attend meetings, galas, and fund-raisers with me.

Carrying a gene for ALS can be a very lonely place, especially when you don’t have the support of family or friends, but End the Legacy, the organization for genetic carriers and people impacted by genetic ALS and FTD, has provided me with a fantastic group of friends. We understand each other, and we support each other in our endeavors: genetic testing, genetic counseling, advocacy, legislation, peer mentoring, enrollment in clinical trials and longitudinal research. The list goes on, and our organization will too, as long as the need is there. In fact, on June 6 to 8, End the Legacy will be hosting its second annual Community Summit, where I’ll be reading from my forthcoming book, Last Nerve: A Memoir of Illness and the Endurance of Family.  

Sometimes, I feel like medical nonprofits and the medical system turn their backs on genetic carriers of ALS. Before we founded End the Legacy, there was a real lack of support for genetic carriers of FTD and ALS. At some of the most powerful ALS organizations, there is very little recognition that 15% of ALS is inherited. When I first found out that I was a genetic carrier, I googled “Genetic ALS,” and the first thing that popped up was a link to a lab that researched it. I felt like there was no place for me to go for information. You see, as genetic carriers, we live in a special kind of hell. We watch our loved ones – grandparents, aunts, uncles, cousins, brothers and sisters, and parents – all die from one of the most devastating degenerative diseases. We watch them lose function in their hands and feet, lose the ability to walk and dress themselves, lose the ability to eat and speak, and breathe. Then we find out we’re carriers and that our kids may watch us go through the same thing. And then we get sick and worry about our kids getting sick. It’s maddening that the medical community members (yes, neurologists and researchers) do not consider us to be patients!

And speaking of not being supported, insurance is the worst. 

The Genetic Nondiscrimination Act only guarantees medical insurance for genetic carriers of fatal diseases. It doesn’t provide any guarantees for long-term care insurance, disability insurance, or life insurance. When I think about the people who need these kinds of insurance, it’s ALS patients. An ALS patient’s care can cost upwards of $200,000 annually, and that doesn’t even provide for caregivers – often kids or spouses – who have to quit their jobs to provide full-time care. My mom’s Medicare plan did not pay for her power wheelchair; she had to pay $25,000 for it, out of pocket. ALS is expensive! 

Here's the rub: If it shows up on your medical record that you carry the C9 mutation for ALS/FTD, you can be denied long-term care insurance, disability insurance, and life insurance. And so can your kids! And that’s one of the reasons that people don’t get tested for the gene. They don’t want to jeopardize their health going forward by taking care of their health now. They don’t understand that if you enroll in longitudinal research, your genetic results are omitted from your medical record. They also don’t know that they can get life insurance and long-term care insurance before genetic testing unless they talk to a genetic counselor first. 

When I found out I carried the genetic mutation for C9orf72, I realized that there was lots of work to be done. I’ve dedicated my life to the fight against genetic forms of ALS, and I hope you’ll read my new book, A War of Nerves.