Health Care Reform Important to Individuals with VCFS

Related: Treatment, Diagnosis, More TagsSocial Issues, Doctors, Research, Doctors, health care reform, health insuranc, Fewer Tags

by Eileen Bailey
Friday, July 17, 2009

The push for health care reform is on, and there are not many people that don't agree this is an area our country desperately needs to work on. With nearly 50 million people in the country without health insurance and, therefore, limited access to quality healthcare, our system is in serious trouble. Even for people with health insurance, the costs are enormous. Not only do insurance premiums take a large chunk of monthly income, having insurance doesn't guarantee your bills will be paid. Coinsurance, co-payments and services not covered add up quickly. Many people live in fear that a serious medical illness will wipe out any savings they may have, or be the catalyst to losing their home.

This year, the Obama administration is making health care reform a priority. Lowering health care costs, lowering health insurance premiums and making health insurance more affordable are some of the areas reform is targeted to improve.

Tony Coelho plans to make sure one additional area of health care is addressed in health care reform: giving a voice to patients and their doctors during the process of determining appropriate treatment for specific conditions. Mr. Coelho is currently the Chairman of  The Partnership to Improve Patient Care (PIPC) and is a former U.S. Congressman from California, first elected in 1978. During his time as a Congressman, he authored the Americans with Disabilities Act, an extremely important piece of civil rights legislation.  Mr. Coelho, who has epilepsy, has worked to further the rights of people with disabilities, including being the:

• Chairman of the President's Committee on Employment of People with Disabilities (1994)
• Vice Chair to the National Task Force on Employment of Adults with Disabilities (1998)

High quality health care is of importance to individuals with VCFS, and their families. Many people with VCFS have health problems from the time they are born. Some require heart surgery and often spend countless days or weeks in and out of the hospital for various health problems. Research is still needed to fully understand VCFS and all the health complications associated with the diagnosis.

Comparative Effectiveness Research (CER) is medical research designed to measure the safety, effectiveness and cost of medical interventions for specific conditions. Insurance companies to determine whether a treatment should be a covered service often use the information from CER. According to Mr. Coelho, this process rarely includes input and participation by patients, instead, patients and their doctors are given an advisory role, with little or no input in the decision making process. In addition, Mr. Coelho indicated that minority groups were under-represented in many studies. (Many clinical trials are based on white males, even though white males are not the only patients) Because of this, decisions on health care have been taken out of the hands of the patients and their doctors and given to insurance companies.