I started in the spring of 2003 by contacting my state senator and representative in my district in Illinois. The Chicago Tribune in the previous year had broken the story about the epidemic rate of hospital infections with over 100,000 patients dying in the U.S. and that MRSA was the deadliest of the antibiotic resistant pathogens. I contacted Michael Berens, one of the authors from the Tribune and asked him what I could do or who I could contact and he said he did not know of any advocacy groups. But he told me," It starts with just one person" and that gave me the idea to just start contacting state officals. The Illinois General Assembly had passed unanimously the "Hospital Report card Act" , written and sponsoresd by Barack Obama, state senator and chairman of the Illinois health and human services cmte. This "ACT" was the first of its kind in the U.S. and required all Illinois hospitals to report on a quarterly basis their patient to RN ratios and also their infection (nosocomial) rates, which will be published on the Ill. Dept. of Public Health's website. I wrote and called my senator and representative and urged them to lobby to Illinois Governor Blagojevich to sign the "Act". They were going to used my letter as debate. I lobbied directly to the Governor for several months and he signed the "Hospital Report Card Act" in August of 2003. It went into effect Jan.1, 2004.
CONSUMER REPRESENTATIVE
I lobbied (phone calls, letters and e-mails) to the Governor, supported by my state senator and representative to be a state board member as a consumer representative. I was accepted and serve on the Hospital Report Card Act CMTE and the Nosocomial Infection sub-cmte.
Hospitals have not yet started reporting and a computer system is still being created and some legislative change is thwarting the movement forward ,which is frustrating me. I continue to push with officials from Ill. dept. Public Health, state senators,and the media. I am pushing for all hospitals in Illinois to report their MRSA infection rates and conduct strain typing so that more data can be collected for research. Surveillance systems are in place from the CDC, but that is not enough. MRSA infection and death rates are climbing to endemic proportions and new strains of CA-MRSA (community-acquired) are being found. The "code of silence" by the health care industry has to be broken and stricter guidelelines for infection control take place. I have lobbied to the CDC and the NIH.
LOBBYING TO FEDERAL AND STATE OFFICIALS
I urge all of you who are interested in helping with this disease to lobby your state senator and representative to pass a "Hospital Report Card Act" in your state. Also lobby to your U.S. Senator and Congressman to have federal funds be increased for research. At present, only 3 million dollars has been allocated for research from the CDC and that is split between 5 researchers, it is way too little. Much more is needed and only the consumer advocacy groups can put pressure on the senate and congress to act. It worked for those consumers (parents) with children who have autism, 100 million dollars for autism research was just announced. We have to push and push hard or this disease can become pandemic. S. aureus has been found to be so virluent and we are far behind in research. New antibiotics and a vacine needs to be created and this takes time and money.
