Why Reproductive Rights Matter to Me

I would have liked to have started this by saying that reproductive rights are suddenly taking center stage in our national discourse again. However, this is not the case. Reproductive rights have been a hotly contested issue for as long as I can remember. These rights have been fiercely attacked and defended with arguments, values, data, and hyperbole. The noise can become deafening.

Like many people, I have a deeply personal reason for wanting politicians to stay out of the way when I seek to access any form of contraception that science can devise or, heaven forbid, when I seek to terminate a pregnancy. However, I feel like my specific circumstance is largely overlooked in the ongoing discussion.

       

Chris, age 13. First day of 8th grade, 1993.

Twenty-three years ago this past Monday, my brother Chris passed away at the age of thirteen. He was born with Duchenne Muscular Dystrophy, an X-linked recessive genetic disease which disrupts the body’s manufacture of the protein dystrophin. Dystrophin plays an important role in preventing muscle cells from being damaged through regular use. People with this disease have their muscles gradually wear out as they use them. By age eleven, Chris needed a wheelchair to move around.  He developed congestive heart failure. Shortly before he died, he started throwing up all of the time because the smooth muscle in his digestive tract was wearing out. He spent the last month of his life in an intensive care unit receiving nutrients intravenously, while remaining friendly and engaging the whole time.

Chris and me, ages 7 and 9. Summer 1987.

Chris and I had a special relationship. I was fewer than two years older than him, and he was my only sibling. We spent most of our free time together - partly by circumstance, mostly because we wanted to. He was safe to enjoy Nintendo and Teenage Mutant Ninja Turtles with, while most of my friends were more interested in George Michael and 90210. He and I made up games of imagination and word-play together and shared everything. He would sometimes cry when I got allergy shots because he didn’t want me to get hurt. I would sometimes whisper in his ear when he was sleeping that he didn’t have Muscular Dystrophy because I saw subliminal messages work on The Flintstones and hoped it might heal him. I stopped when I considered how sad he would be if he believed me and hurt himself trying to get out of bed the next morning because mind over matter was not enough.

Since about the age of nine or so, I’ve known that I’m a carrier for Duchenne Muscular Dystrophy. The disease is X-linked recessive, so women don’t typically get this type of Muscular Dystrophy – their second X chromosome makes up for the damaged one. However, their sons have it at a rate of 50%. Tests for carrier status in the 1980’s were somewhat unsophisticated, so I had part of my X-chromosomes sequenced in 2008 shortly after I got married to confirm my carrier status. It turns out that a single DNA base pair of my and my brother’s (and probabilistically my mother’s) genome has caused all this heartache. There is an A where there should be a G, just a single random mutation. This turns a tryptophan amino acid into a stop codon, cutting short the entire dystrophin protein generated by that chromosome.

I decided decades ago to never have children. This disease dies with me. I’m aware that there are options out there with IVF and who knows what else to reliably screen my ova for the broken X-chromosome pre-conception. But getting a treatment like this feels dishonest to me. Like somehow Chris wasn’t good enough so I have to have babies that aren’t like him, which absolutely breaks my heart. Besides, I started forging my life in a child-free direction before I had even heard of these technologies. The idea of motherhood has always felt alien to me, in part because it has always been such a challenging thing for me to attain responsibly.

When I hear old men in power trying to take away my contraceptives because they think that they have any right to an opinion about how I manage my own reproduction, I feel it in my marrow, I feel it in my liver. Can they possibly appreciate the level of heartbreak they are wishing on me? On my husband? When I hear about politicians thinking they have any business about whether or not I terminate a pregnancy, I go numb. I have gone to extensive lengths my entire adult life to make sure I never have to make that decision, because I can’t imagine a harder one. Were I to become pregnant, I would have to find out as soon as possible if the fetus I was carrying was affected and then possibly need to make an immensely difficult decision. Should I abort the fetus for being like my dear brother? Or bear a son and cry myself to sleep every night for twenty years while he wastes away in front of me in a pattern I know too well? To have institutional powers get in my way or make the decision any harder is one of the cruelest things I could imagine happening to me.

This is an old story to me, but not one that I often tell. It’s very personal. But everybody has their own personal narrative and reasons for living the lives they do and making the choices they do. Don’t assume you know their reasons.

Drawing by Lisa Burstein, 1993, based on Spring 1987 photo.

SHIP in Danger of Losing Federal Funding

For years now, I’ve been volunteering with an organization called SHINE (Serving the Health Information Needs of Everyone).  SHINE is the Massachusetts implementation of the nationwide SHIP (State Health Insurance Assistance Programs).  SHIPs provide free, personalized, unbiased advice to Medicare beneficiaries about their health care coverage options.  

Every state implements SHIP a little differently.  In Massachusetts, SHINE Counselors complete 50 hours of rigorous training, followed by a test administered by the Massachusetts Executive Office of Elder Affairs.  After this, the counselors must attend monthly meetings to stay up-to-date with policy and regulatory changes and take an annual recertification exam.  I’ve been a state certified SHINE Counselor since June 2015 and just passed my recertification exam.

The material is not easy.  For example, did you know:

• Massachusetts has a program called CommonHealth available for people with disabilities.  It offers the same benefits as MassHealth (i.e. Medicaid), but it’s not the same program.  If you’re over 65, you must work 40 paid hours per month in order to participate, but this is not the case if you’re under 65.  You can get kicked out of the program and lose your health coverage if you turn 65 without realizing this.

• If you have a privately administered Medicare Advantage or Medicare D plan, your doctor/hospital/pharmacy can stop participating with the plan’s network in the middle of the plan year, leaving you without access to your preferred medical providers until open enrollment in October (when you can select a new plan to take effect in January).

• Medicare will not reimburse hospitals for the first 3 pints of blood you receive.  You either have to give it back, have someone give it back on your behalf, or pay for it.

While the program is staffed largely by volunteers, it still costs money to administer.  In total, the 54 state and territory SHIP programs nationwide receive $52.1 million/year of federal funds.  That’s less than $1 million per program per year.  Some states provide supplemental funding to their program; Massachusetts does not.  The Massachusetts SHINE program only has these federal funds to serve over 100,000 Medicare beneficiaries.

But wait - there’s more.  The Senate Appropriations Committee last month nearly unanimously voted to completely defund SHIP in the FY17 federal budget through the Labor, HHS, Education Appropriations Bill.  This still needs to get through the House of Representatives before it passes, but it doesn’t look good.  

The thing is, the need for SHIPs is largely a failure of markets and the government.  People turning 65 who are new to Medicare turn to SHINE when the Social Security Office can’t answer their questions or can’t give them an appointment (employees of the SSA will often refer over their complex cases).  Major medical centers all have financial services offices staffed with employees who are paid to help low-income patients apply for Medicaid and other assistance programs, among other things, but they often miss the people who don’t know to ask for help.  Medicare D is structured in such a way that elderly people in cognitive decline need to pick out a new plan every year to make sure their necessary prescription drugs are still covered -- which means that they need to call SHINE to operate the internet for them each year because there is no government-administered Part D plan that they can trust to be reliable from year to year like there is for Medicare A and B.  

An army of unpaid retirees, students, and housewives is not a sustainable solution, nor should it be.  Charity and non-profit work is virtuous, but it is not a strong foundation for America’s health care industry.  If people with complex situations can just be handed off to volunteers without resources, what are we paying for?  If our health care system doesn’t serve all of us, it doesn’t serve any of us.  If it only serves us when we are young and healthy, and can turn to dust when we suddenly have a permanently cognitively debilitating seizure; urgently need an anti-clotting drug that is not on our plan’s formulary; or our trusted medical specialist stops accepting our insurance six months before we can buy new coverage at open enrollment - if it only serves us when our health needs are simple, what do we really have?

In all, SHIP does real good and helps real, vulnerable people with nowhere else to turn.  If it loses its federal funding, even if the program continues without it, people will be hurt.  Yet the program remains a symptom of a fragmented, expensive health care system that often harms the people most in need of its help.

Beyond Binary: Collecting Gender Identity Data in Federally Qualified Health Centers