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In 2004, local community groups placed a constitutional amendment on the ballot creating a right to “healthcare for all.” Massachusetts election law requires constitutional amendments be approved by the voters and the legislature twice in two successive elections. Both the legislature and voters approved the measure in ’04. But in 2006, Governor Romney, at the request of health insurance carriers worked with the then House Speaker to derail the legislative action, and instead introduced the current scheme as a compromise.

Massachusetts implemented as a compromise– a universal access plan. That means every Massachusetts resident has access to a health insurance policy. Bay Staters go to an online insurance marketplace where they compare privately run plans and select one as their insurance carrier. These private insurance policies are subsidized in part by the Commonwealth. Failure to enroll in a plan results in a substantial income tax penalty. Mass Health, the State of Massachusetts’ managed Medicaid plan was opened to low income beneficiaries, but is managed by HMO’s and insurers.

What it doesn’t mean is that there is a single payer system like social security or Medicaid that administers government healthcare benefits for the people of Massachusetts. However, it does raise serious questions. Massachusetts is still a guaranteed issue state. That means every state resident is entitled to an insurance plan. It does not however, guarantee a particularly good one. While it is true that income is a consideration in issuing policies, policies for the vast majority of residents are quite expensive. From a public policy standpoint there is the question of duality. The insurers and HMO’s are corporations. Corporations as a matter of law have a primary obligation to return profits to their shareholders. If profits are your first priority, then maybe health outcomes aren’t.

From my small corner of the world it seems to me that Mass Health has done a remarkable job of providing care to folks who had no options for healthcare, if you were uninsured before the law took effect, government has effectively incentivized through a series of carrots and sticks near universal compliance. Chronic illness has been addressed less well. Health insurance policies still have a cap. As such, all of the existing issues with lifetime caps remain largely in place.

If you didn’t have coverage before, you are able to access a plan now. This means that anyone with a bleeding disorder in Massachusetts can get some form of health coverage. However, for people with bleeding disorders this historically has not been the obstacle precluding consumers from accessing adequate care.  The current delivery system has been made to fit the needs of people across the bleeding disorders community. After all, not fitting the needs of consumers would have had catastrophic consequences including joint damage, internal bleeding and ultimately death. The current system seems ages away from a time when news broadcasts and broadsheets were punctuated with appeals to the wider community for plasma, so hemophiliacs could infuse products that might help them clot.

This progress however, does not come cheaply. Creating the health infrastructure that serves this small, resource intense community is sizable. The clotting factor patient use to help stop bleeds, ancillaries associated with treatment like, gauze needles, alcohol wipes can cost an average patient upwards of $250,000 per year.  Then consider that everyone in the bleeding disorders community will at some point be exceptional. That’s to say, that everyone will have a bleed that will require additional medical care. For example, a teenager needing to have two wisdom teeth pulled could ultimately cost the family of a hemophiliac somewhere in the ballpark of $25,000 over the course of treatment for that one bleed. Most of us pay our co-pays for the dentist, and give it little thought; but the cost of care in the bleeding disorders community is omnipresent.

The only thing people in the bleeding disorders community worry about more than the cost of ongoing care, is the cost of not receiving timely, appropriate care. Enormous resources are expended to bring the factor meds to market that hemophiliacs rely on. When these products are taken as advised under the care of a doctor, most people with a bleeding disorder live well-integrated, well adjusted lives.  When patients are able to treat as prescribed

Over time a system of vendors including specialty pharmacies tasked with providing home nursing services and delivering these unique pharmaceuticals has grown up to serve the needs of these specific consumers. This is compared with much of the first world, where government bureaucrats put contracts out to bid to vendors and one product is selected to service all people with Hemophilia. The providers servicing hemophilia patients across our country are amongst the most efficient in the world. Efficiency doesn’t come cheap, but how do you put a price on a loved one’s life.

The course of necessary treatment for a patient with von Willebrand’s Disease is materially different from that for traditional Hemophilia. Massachusetts has taken the first step toward limiting the range of access to product in recent years by imposing a preferred drug list. There are no generic versions of factor available to community members in the United States at this time. Hemophilia however should be thought of as not one disease, but a series of inter-related bleeding disorders requiring multiple products. The infrastructure described above makes it possible for community members to live routine lives; work, raise families and pay taxes. If this system is compromised, our neighbors will go from paying taxes to drawing social security and Medicaid benefits.

Healthcare reform promises to challenge this community and our larger country in ways inconceivable to us, two three, five years. It will redefine how we access care, what care looks like, our relationship with medical providers, and our relationship with government. I have learned there is no perfect system. But it is obvious based on the Massachusetts experience, that people with chronic illness generally were an afterthought. For that reason alone our country must consider a wider range of solutions to secure healthcare for all of us.

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