Tag Archives: Ghettoization of Genetic Disease

Supporting Our Patients and Their Right to Choose Means Opposing Graham-Cassidy

If you are a genetic counselor supporting the Graham-Cassidy proposal to replace Obamacare, you are a rare bird. Most genetic counselors – most medical professionals – most Americans for that matter – are opposed to this bill, because it compromises our ability to provide basic, essential medical care for people in need. It is not in dispute that millions of American will lose health insurance under this bill. Those with health insurance will generally pay more for less. Many of the changes remove existing protections on which our patients are particularly reliant. Here are some examples:

 

PRE-EXISTING CONDITIONS

The bill will allow states to eliminate regulations on pre-existing conditions, so that people will risk losing coverage if they change or lose their jobs. This is a disaster for individuals with chronic health problems including genetic conditions, and potentially a disaster for individuals who carry susceptibility genes. Although you might make the case that GINA should protect those individuals in theory, in practice it becomes hard to draw the line for what constitutes an existing disease in an at-risk individual. For instance, if a Lynch Syndrome carrier requires special screening and has polyps removed, are they preventing disease or symptomatic? Will a subsequent carrier argue that they already showed signs of Lynch and therefore are not covered for further screening or colon cancer? The fact is that Obamacare arrived before these questions got answered, and there is a very real risk that GINA protections will be eroded when the actual lines between pre-existing and manifest disease are drawn.

 

PRENATAL CARE

The new law allows policies to limit or even eliminate coverage for prenatal care. This logic of this abomination – the disgusting and perverse logic to be voted on by a collection of doddering old men who apparently were not of women born – is that pregnancy is not a disease but a choice, and affects only subset of women, so that others should not be asked to bear the costs. This decision abrogates the most fundamental obligation of civil society, which is to raise the next generation. You have one job, civilization. One job.

 

Every politician who argues that it is not fair to ask everyone to pay for insurance that covers prenatal care should be asked if they believe it is fair to ask women to pay for policies that cover prostate cancer care. Or who it is they believe will care for them in the nursing home, or fight for them in their wars, or protect their streets or teach their grandchildren or write their history books if not the next generation of Americans.

 

But you see here I am getting worked up, and the very righteousness of this anger masks another aspect of this change that has particular resonance for genetic counselors: limiting access to prenatal care limits access to prenatal testing, and limiting access to prenatal testing to those with more money will mean that those genetic diseases and conditions for which we can test will change the essential nature of genetic disease – no longer something that happens to everyone, it will become an affliction of vulnerable individuals. I wrote about this in a recent essay, calling it the Ghettoization of Genetic Disease, and this bill will help make that dystopian prediction a reality in the near term.

 

LIFETIME CAPS AND DISABILITY CARE

The Graham-Cassidy bill eliminates protections on lifetime caps, meaning that many individuals with chronic conditions, including genetic diseases, may end up without coverage. In addition, the cuts to Medicaid and other federally funded programs would radically reduce support for individuals with disabilities.

 

On the surface, flat out, this is heinous and cruel. Beyond that, for the genetics community, this undercuts the promise we make, by implication, to every woman or couple who decides to move forward with a pregnancy affected by or at risk for genetic disease. Supporting choice in reproductive decision-making is not a simple matter of holding someone’s hand through a difficult day. Supporting autonomous decision-making as a field means fighting for those individuals and families to be supported throughout the lifecycle.  The choice to live in a world that offers no support or resources is no choice at all for most people.

 

LET’S TAKE A STAND

It is extremely unfortunate that healthcare, a subject of mutual concern and importance to all Americans, is now held hostage to the ignorant, pettiness of slogans on signs that angry partisans wave at campaign rallies. No professional organization wants to get embroiled in party politics. On the other hand, there are times when everything you believe in is threatened and you have to take a stand. I believe this is one of those times.

 

I’m hardly alone in this. The AMA released a statement yesterday opposing Graham-Cassidy. So have many other groups representing healthcare professionals and patients, a number of them listed here in Jimmy Kimmel’s eloquent denunciation of the bill (comedians must lead when politicians are clowns, I suppose, and what else can he do when our government is beyond satire?).

 

So please, NSGC, make us proud with a statement against this terrible bill. Let’s take a stand for our values and, more importantly, for our patients.

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