Thoughts on the new U.S. Health Care Law

By: Joyce Wilcox Graff

The process of getting this new law through Congress showed us the worst side of politics.  People sometimes compare the process of making laws to the process of making sausage.  Even if you like sausage, you probably don’t want to look too closely at the process of making sausage – it’s bloody, messy, and if you know too much about it you might never want to eat sausage again. 

Nevertheless, we need healthcare reform, and we are finally taking action. 

At our February meeting in Memphis, Tennessee, our speaker, Dr. Robert A. Sanford, one of the leading neurosurgeons in the Mid-South area who has treated people with VHL for more than 30 years, began by pleading with us to work for healthcare reform because half of the people he sees who have VHL don’t have insurance and can’t get it.  While he has frequently done surgeries without charge, that doesn’t mean there is no cost to the patient – there are still charges for the operating room, the imaging studies, the radiologist, the anesthesiologist – enough to cause you to lose your house.  We talked with the five medical professionals who joined us in Memphis about how we might improve diagnosis and treatment of people with VHL in the area, and it came down clearly to one thing – everyone needs access to preventive care.  You can’t get a diagnosis of VHL without a primary care physician and regular care.

With a condition like VHL, emergency room care is not good for your health.  Emergency rooms are for urgent care, like accidents.  People without insurance have come to rely on the policy of federally-funded hospitals to take in people through emergency who do not have insurance.  But that means that you have to wait until your situation is very serious before you can present yourself to an emergency room.  If you go in for headaches, they will give you aspirin and send you home.  If your situation is critical, they will probably do an MRI and the required surgery.  But will that surgeon know enough about hemangioblastomas to do a good job?  Will you survive?  And will you wake up whole or with deficits?  In order to manage VHL successfully you need proactive preventive care.

Studies show that people who do not have insurance coverage do not go for preventive care.  In the case of breast and prostate cancer, advances in the survivability of these cancers is primarily due to early detection. Still we see that the presence or absence of insurance makes a big difference in the utilization of available screening tests. According to the most recent available data, 60% of women with insurance had a mammogram within the previous two years, while 42% of uninsured woman had never had a mammogram at all. 

The differences are even greater for men: while 40% of men with insurance had had a PSA test (a simple blood test) within the previous two years, 62% of uninsured men had never had a PSA test at all.  Although screening tests are not perfect, they can play an important role in the early detection of dangerous cancers. The failure to detect lethal disease early on is not only measured in suffering and earlier death, it also drives up the cost of health care borne by the public.  When a person with no insurance has advanced cancer (detected late), it is the American taxpayer who pays their much higher bills.  How much better for all of us to find dangerous cancers at earlier stages, remove the tumors and save lives.

I have had the privilege of traveling to 26 different countries and visiting with people with VHL in those countries.  It has given me a chance to see VHL through the eyes of different health care systems and medical cultures.  The most striking difference for me has been that in countries with health care for all, the health care system has undertaken to keep people healthy, in the workforce, and paying taxes for their entire lives.  They take the long view – not the short-term bottom-line view that most insurance companies in the United States have traditionally taken.  Yes, they will pay for another MRI this year because it will lower the lifetime cost of managing this person’s health.  Even seen in monetary terms, it is clear that this approach will keep all of us happier and healthier throughout our lives.

Finding issues earlier means that younger people in particular need careful preventive care.  More than 30% of people between 19 and 26 do not have health insurance.  [See Figure 3}  Why?  Because they generally fall off their parents’ family plans at age 19.  In a first job they are often paid lower wages and may not even be offered insurance, or may not feel they can afford it.  And yet this is the age group where VHL issues generally arise and are most prevalent.  This is the age group that needs the most careful monitoring to preserve their health and function for the rest of their lives.

The new U.S. Health Care law as passed is a start.  It is not perfect by any means, and there is a great deal of work to be done just to get the current law implemented.  According to Dr. Risa Lavizzo-Mourey, President and CEO of the Robert Wood Johnson Foundation, which has been studying healthcare in the United States for more than 40 years, “The new law meets core principles for coverage set down by the Foundation and offers the country the opportunity to improve the health of our people.”

There are several things in it that will make a huge difference for families with VHL, beginning this year.

1. Consumer protection to keep insurance providers from imposing lifetime spending caps, or arbitrarily dropping people from coverage when they are sick.
2. Coverage for children to age 26 on their parents’ family plans.  Some plans (notably UnitedHealth, Kaiser and BlueCross) have already made this change, others will follow between now and September 2010. 
3. Children can no longer be denied coverage due to a pre-existing condition or DNA status.  Implementation for adults will be gradual over the next few years, fully implemented by 2014.
4. By June 2010, each state must have a “high-risk pool” which will provide health insurance to people who cannot afford insurance premiums either because their income is low or because the rates they are offered are too high to be affordable. 

In some states insurance companies are raising their rates now while they can, before the new controls go into effect in 2014.  There is work going on in Congress to provide impetus for the states to regulate insurance rates if they do not already do so.  If health insurance rates in your state are rising – in some cases by 30-40% in one year – you should speak with your elected representatives to let them know what this means to you.  Some of these increases are for everyone, but in some cases they are attempts to make insurance unaffordable for people with serious health issues.  Do not let this happen to you.  There are new protections even in the current law – be sure to take advantage of these protections and keep yourself and your family insured.

What does this mean to me in my state?

Each state is responsible for implementing the law according to the federal guidelines.  There are two primary websites which give you the best up-to-date information about where to go, who to ask, and what to expect in your own state. 

http://www.covertheuninsured.org sponsored by the Robert Wood Johnson Foundation.  On the homepage of this site there is a map where you can choose your state.  For each state there is a document that describes your options for access to health care and insurance.  Check here first.

http://healthreform.gov has a map with updated reports by state of the changes already implemented in each state and how to contact the services you need.

http://familyvoices.org has  a rich set of resources for families caring for a child with special needs.  This broad definition includes children with a broad range of conditions or chronic illnesses such as cerebral palsy, developmental delay, ADHD, depression, asthma, and von Hippel-Lindau, as well as children who develop a significant medical problem that is expected to last at least twelve months.  They also have a listing by state of the Family-to-Family Health Information Centers (F2F HIC’s) that will help you access the services and resources you need in your area.

Comparative Effectiveness Research

Let me say a word about comparative effectiveness research (CER), since this is also a phrase that has been used and abused in the media.   For all conditions little is known about which treatments work better (or less well) for people in particular circumstances.  The Institute of Medicine (IOM) has been charged with doing research to determine the comparative effectiveness of different therapies.  The IOM is not a government agency.  It is an honorary society of top physicians and researchers, like the National Academies in England or France.  Doctors are elected to the IOM by their peers, to honor their achievements.

Today, the information we have comparing treatments generally comes from the pharmaceutical companies, or from those who are trying to sell you something.  As one simple example, what is the relative effectiveness of the various anti-depressants versus exercise, yoga, or camomile tea?  If your doctor prescribes 30 minutes of walking three days a week, is that to save your insurance company’s money? Or is that to save you the potentially serious side effects of an anti-depressant pill?  Read that list of potential problems on the label, and you decide. 

One of my favorite examples is from a cousin of my husband’s who is a retired dairy farmer in Sweden.  She has a prescription from her doctor to go to water aerobics three times a week at the local public swimming pool, to keep the arthritis in her knee from worsening. A knee replacement is serious surgery with a difficult rehabilitation for a 70-something lady.  Water aerobics feels good, is a lovely social outlet, helps keep her fit altogether, and therefore helps her avoid depression, diabetes, and a whole number of other potential issues.  A knee replacement and rehabilitation can cost as much as $100,000 in the United States [see Note].  How many people could that payer send to water aerobics for how many years for $100,000?

So yes, in part CER is about saving money.  But more than that, CER is about keeping us all healthier and avoiding the dollar cost and the human cost of illness by simply avoiding illness, or avoiding complications, and prescribing the optimal therapy on the first try.  And the legislation has been carefully written to make sure there is provision for people with rare disorders that may not fit the “usual” model.  While one remedy may work well for most people, it should never be the “only” way to do things, as there will always be exceptions.  People with asthma may need special handling, or a drug may be more or less effective for people with one additional genetic trait.  But it can only benefit us all to have ways to collect information about outcomes, and open discussions about the pros and cons of different approaches – not only about one drug versus another, but about different strategies too.

Note: Estimate from Paul Brough, CEO of Pinnacle Health, a provider of employee healthcare insurance to employers.  See Powerful Patient, 2008 week 37, “Medical Tourism”, http://tinyurl.com/pptourism

See interview with Tony Coelho, Chairman of the Partnership to Improve Patient Care (PIPC), Powerful Patient 2010 week 3, http://tinyurl.com/ppeffective

As printed in the VHL Family Forum 18:2, May 2010. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.