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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I fully agree that the NSGC should take a firm stand against this bill and any other that would decrease access to affordable care. The ACA is not perfect and improvements are needed, but to throw millions off of their coverage so that the wealthiest can enjoy a larger tax break and insurance companies can make even more money to provide less coverage is horrifying to me. This isn’t a political stance, it is a humanitarian one.
Laura Hercher – thank you for writing this and I am 100% with you. Draft a statement and send it to Mary Freivogel!
This is probably one of the easiest issues to take a stand on–not only is the bill inarguably terrible (and cruel), the NSGC would already be in excellent company with the AMA, American Heart Association, American Lung Association, etc. Let’s see a statement on behalf of genetic counsellors and our commitment to patient wellbeing!
Amen, Sister Laura. Praise be to you.
We should channel our outrage into constructive conduits. Genetic counselors need to join the many health care organizations in expressing professional condemnation for a poorly vetted bill that is being hurriedly foisted on the American public. As far as I can tell, the “need for speed” is a function of the current legislative and executive branches desire to look like they can actually accomplish something that they never should have promised in the first place, sick people be damned.
The condemnation is coming from groups that are not usual bedfellows – health insurers, the AMA, hospital organizations, patient support groups, etc., so it is not just a liberal vs. conservative or Republican vs. Democratic battle (at least outside of Congress). The more people that yell, the louder we will sound and the harder we are to ignore.
And we need to keep on doing it every time they try. They shouldn’t be able to wear us down by repeated attempts. Make it clear to’em that they have to stop these shenanigans and follow their Constitutional duty to tend to the health and well-being of the many and diverse American people they serve.
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Only a liberal would quote a comedian and expect to be taken seriously on such an important issue!
As a woman, no, I don’t want to pay for coverage for prostate cancer, Nor should a man have to pay to cover a pregnancy ! That’s lunacy!
An overwhelming majority of the people who signed up for “Obamacare” were thrown onto Medicaid, which they were eligible for in the first place! Millions of people who had good coverage, and that they liked, lost their coverage because of Obamacare! Under Obamacare those that didn’t lose their coverage saw their premiums soar, in many cases to the point where they could no longer afford to keep it!
Obama care was counting on the middle class to pay for those who would get “subsidies” . What young healthy 20 or 30 something is going to pay over $400 a month for an insurance policy that has a $7000 a year deductible?? An insurance policy that they won’t even be able to use! Like my children and many others like them they chose to pay the fine instead!
While some say that Obama care is “not perfect” , I say that Obama care is far from perfect!
They said that Obama care would relieve pressure from overburdened emergency rooms, we saw the opposite happen. In fact even more people Poured into the emergency room with Obama care.
Under Obamacare doctors all over the nation have started requesting cash payments, many of them not even accepting it because it would bankrupt them.
This attempt at pushing towards a single payer system will fail miserably.
As a person who holds dual citizenship I can tell you that the healthcare system in Europe is in complete shambles! How would you like to wait a year for an MRI that could’ve saved your life? I could go on with 100 more examples off the top of my head. I have watched Relatives in Europe suffer needlessly and die thanks to socialized Medicine! There is a reason why people from all over the world come to the USA for medical treatment, it is hands-down the best in the world!
Be very careful what you wish for!
In science we have a word for “examples off the top of my head” and the plural of it is not data. In fact, by every available metric, health systems in Europe ARE both better and cheaper. The AMA and other organizations of health professionals opposed this bill and other attempts at repeal. Exclamation points alone do not make political talking points into fact.