Health Insurance Reform - The Most Important Improvement in Hemophilia Care Since Factor Concentrate

Horizons in Hemophilia, February 2010

By Jeff Cornett RN MSN, Director of Training, Research, & Advocacy

Older men with hemophilia often describe life before factor concentrate as "being tied to the emergency room."  Any time they had a bleed, they had to go to the hospital, wait for cryoprecipitate to be prepared, get hooked up to an IV, and sit and wait for it to flow into their bodies.  Hemophilia dominated many aspects of their lives.

Now that safe and effective treatment is available for hemophilia, people with the disorder have been freed from the emergency room.  But the high cost of treating hemophilia has left them tied to a system that still restricts their lives - our current system of health insurance.  The good news is that we are closer than ever to fixing this system but your help is needed to pressure Congress to act.

Here are some examples of how the system currently works in Georgia:
Young men who have health insurance through their parents' employers will lose coverage when they turn 19 years old, unless they go to college as full-time students.  In that case, they can usually remain on their parents' insurance plans until they graduate or turn 25.  Then they will be uninsured.  The individual insurance market is completely closed to people with hemophilia.  The only hope for health insurance is to be hired by an employer who has a large group insurance plan.  Choosing a career involving self-employment, for example, as a graphic designer, mechanic, or opening a business, means giving up the possibility of having a way to pay for hemophilia care.   The State of Georgia provides a limited amount of money each year to buy factor concentrate for uninsured people with bleeding disorders but there is no guarantee that there will be enough money to provide everyone with factor.  Also, this money doesn't cover treatment for any other healthcare needs a person might have.

Young people who have Medicaid will lose coverage when they turn 19, unless they are disabled.
Small businesses who hire a person with hemophilia soon realize the impact of having a person with an expensive, chronic condition on staff.  The health insurance costs for the small business quickly rise to an unaffordable level.  Employers who wanted to offer health insurance benefits to employees are forced to drop coverage for everyone.  Or they may look for a way to simply "drop" the employee.  This also happens to parents in small businesses when a child is born with hemophilia.  At a small business, mom and dad are usually okay for the first few years of their child's life.  As their child grows and factor usage and costs rise, however, the employer will find it difficult to continue providing health insurance.

Both the health insurance reform bills being considered in Congress will change these situations dramatically.  For the first time, health insurance companies will not be able to deny coverage based on a pre-existing condition.  Individuals and small businesses will be able to purchase health insurance through Health Benefit Exchanges.  These Exchanges will allow quality health insurance to be purchased from private companies at affordable rates.  Health insurance companies will not be allowed to raise rates or cancel policies because a person has a condition like hemophilia.  Low-income people will receive financial assistance to buy the insurance.

These changes alone open up a new world of employment opportunities to people with hemophilia.  They can now choose to work for a small business or work for themselves and still have quality, affordable health insurance.  We'll free our young people to achieve their potential.

Of course the benefits of health insurance reform will extend to everyone, not just people with expensive chronic conditions.  No one will face having their health insurance cancelled or become unaffordable because they become ill.

Please contact your congressman today and tell them to pass health insurance reform.  Some of our Republican congressmen are offering an "alternative" reform that includes changes to medical malpractice and allows health insurance companies to sell across state lines ("association health plans").  These changes will not fix the current broken system.  People with hemophilia will still be locked out of the individual insurance market and everyone will still be at the mercy of the health insurance companies.

A good non-partisan source of information about health insurance reform is the Kaiser Family Foundation (no relation to Kaiser Insurance).  Their website is www.kff.org.  You can learn more here.  Please feel free to call or email Jeff Cornett, HoG's Director of Training, Research, & Advocacy with any questions you have about health insurance reform.