Jeannine Christensen’s father died five months after contracting multiple hospital infections post surgery: “Though my dad died back on Nov. 12th of 2004, I feel his loss every day and am constantly remembering how he suffered senselessly…I hope that someday the law will pass whereby others will not have to suffer as much as those like me, my dad and our family have.”
In 2003, 63-year-old Marion Costa was rushed to the hospital for treatment of a life threatening gastrointestinal bleed. After surgery, she had to be treated for four different infections: MRSA, phlebitis, a blood infection and C-Difficile. She has been a key activist pushing for passage of a hospital infection reporting bill in her home state of New Jersey. The bill was passed by the legislature and is currently on the governor’s desk for signature.
Consumers Union and 17 great drug safety activists came to DC at the end of June for the FDA’s one-hundreth anniversary. These activists told Congress their personal stories of suffering and prescription drug side effect problems. Together, we told the FDA and Congress to do more to protect our health and ensure medications on the market are safe.
We held a news conference and meet with members of the House and Senate that day. A group of bipartisan House members and two people with personal stories of suffering due to prescription drug side effects spoke at the news conference.
Ohio resident Cathy Harter met with Senator DeWine of Ohio personally. Cathy’s son, Stephen died due to a drug side effect that its maker knew about, but did not disclose to the public. Senator DeWine listened to her story and agreed to support drug safety legislation in Congress.
Everyone who cam to DC that day, came away inspired by our power to make change. These 17 activists have become leaders in a movement that will one day ensure that Congress and the FDA fix our broken drug safety system.
The Prescription for Change campaign will be working closely with these activists and we hope with YOU as well over the next year to make sure Congress acts this year and passes strong drug safety legislation.
Helen Haskell, founder of Mothers Against Medical Error (MAME), was another key advocate for the Stop Hospital Infection Campaign in South Carolina where she worked with a coalition of other activists (individuals with hospital infection experiences) and organizations (John Ruoff, SC Fair Share; Theresa Arnold, SC AARP; and other) to get the hospital infection public disclosure bill passed into law. Helen became a patient safety advocate after her 15 year old son died from a medical error in 2000. She successfully worked for passage of the Lewis Blackman Hospital Safety Act in 2005 in honor of her son. The law requires all doctors wear identification tags, so patients will know if a doctor or medical resident is attending a patient.
In Connecticut we worked with Jean Rexford of the Connecticut Center for Patient Safety and individual activists who testified at public hearings and citizen activists who wrote their legislators to push for the passage of SB 160, making hospital infection rates public. Ms. Rexford is the Executive Director of both Connecticut Patients Rights (CPR) and the Connecticut Center for Patient Safety. Both groups advocate greater health consumer awareness of the risks inherent in the current health care system. The Connecticut Center for Patient Safety seeks to educate health care consumers and medical professionals about the latest efforts to increase safety measures within health care settings. The Center also acts to represent health consumer interests within other organizations focused on health care issues.
Ann Marie Robinson
On Halloween night 2004, Ann Marie Robinson of California spent the night in the local hospital. “I came out the next day with Clostridium Difficile, something worse than what sent me there in the first place,” she says. Frustrated with the hospital’s response to her problems, she wrote a letter to the editor of the local newspaper last year seeking other people in the same situation. Within 3 days, 46 people had called, and so she created “Infection Connection.”
“The original letter to the editor got the attention of Melissa Cabral, from the local TV news channel, who phoned me with some questions,” Ann remembers. “I suggested she interview a man whose wife had recently died from ‘complications.’ Then one of the local papers put an article in their paper about our group.” This finally got the attention of hospital administrators, who agreed to come to a meeting. “They came — not so much to listen, but to try to convince us we had all gotten our infections out in the community and not at their hospital. The 76 angry people were not convinced.”
As a result of the hard work of Infection Connection and the thousands of supporting letters from online activists, a hospital infection disclosure bill is now moving forward in California. “We are presently working hard to get SB 739 passed in California requiring hospitals to keep accurate records of their infection rate and make that information available to the public. Thank you Suzanne, Lisa, and everyone else at Consumers Union for all the help and support you are giving to our group.”
Raquel Claveria Sanchez
Raquel Claveria Sanchez contacted Consumers Union’s Stop Hospital Infection Campaign about her father’s death from a hospital-acquired infection in Houston, TX. She dedicated herself to hospital infection reform as tribute to her father, Dr. Joaquin Claveria–a Cuban born teacher and inspiration to his family. When he entered the hospital he was 88, leading an active life, and writing a book about his life and his native country. Raquel had his book published after his death.
After a blitz of email letters to legislators from Consumers Union’s online community, several infection reporting bills were filed in 2005. Raquel traveled to Austin from her home in Houston, Texas to meet with state legislators about them. Although a final public disclosure bill did not pass, the legislature created Texas Advisory Panel on Health Care Associated Infections, and Raquel was appointed to serve as the consumer representative. The panel, which also includes health care professionals, will recommend legislation for hospital infection reporting in 2007, the next time the Texas Legislature meets for general business. Raquel’s committment is unwavering, and she will be there along with our online community to make sure legislators know that this bill must finally pass the next time around.
In October of last year, Terri wanted to become involved in her state’s special election in a real way. With each passing day, she became angrier about the TV ads the drug companies were constantly running to defeat real drug price reform.
As an e-activist with Consumers Union, Terri received an email from us in late October, asking for volunteers to come in to our West Coast Office in San Francisco to help reach voters by phone on Prop 79. Although she has a full-time job, Terri was excited to help out in any way she could, and she volunteered to make calls to voters one Sunday afternoon and one weeknight, for hours at a time!
After the election, Terri wrote in a note to Consumers Union, “Thank you, again, for the opportunity to ‘do something’ and for the lovely election night party you guys put on. The only thing that would have made it better would have been a vastly stronger showing — and a WIN — for 79. But at least 78 was also defeated, in spite of the money the drug companies spent.
You did have a great group of volunteers, and I was absolutely delighted to see how many young people were involved in the campaign. It gives me hope as to the political future…and that’s no small thing to have.”
Lisa Toolen’s son, Jimmy, was an active and healthy 15-year old who had out-patient knee surgery in 2005. They never imagined that it could turn into such a life changing event for her family. But that was before he developed a debilitating infection from his surgery that threatened his life and ultimately may leave him permanently disabled. Since his initial surgery, Lisa’s son has had five more surgeries and is preparing for another one to repair the damage caused by the antibiotic resistant infection that has wreaked havoc on his health. Ms. Toolen attended all the public hearings to support the hospital infection disclosure bill, telling legislators about her son’s story and the continuing struggle to save his leg. She also was interviewed by print and television media, which helped to educate the public about hospital-acquired infections.
Kim Witczak and Eric Swan
Kim Witczak and Eric Swan take the fight for good information about prescription drugs very seriously.
In 2003, Kim’s husband and Eric’s brother-in-law, Woody, filled a new prescription from his family doctor for the antidepressant, Zoloft to reduce insomnia and “help manage the stress of a new job.” Woody had just taken a position as Vice President of Sales with a start up company about 2 months prior.
After 5 weeks of being on the drug–Woody took his own life. He had no history of mental illness, depression or any other problem. Woody was not warned about the need to be closely monitored when first going on the drug or when the dose was increased–the 3-week sample pack from Pfizer doubled the dosage from 25 – 50 mg. Last year, Kim Witczak contacted Consumers Union, after learning about our efforts to improve drug safety, and worked with us to schedule meetings with her representatives. Since then, Kim and Eric have met with Governor Pawlenty and Representative Jim Ramstad of Minnesota, among others. Rep. Ramstad became a joint co-sponsor of drug safety legislation in the House. Kim and Eric have also been helping to lead a campaign in MN to require drug companies to release the results of all clinical trials they conduct to doctors and the public, not just the ones that make their drugs look good. This legislation received bi-partisan support and widespread media attention. Also–over 3,000 Minnesotans wrote letters, made phone calls and signed Kim’s petition in support of this bill.
This legislation may not have passed this year, but you can bet Kim and Eric will be back again next year to make sure this important patient safety bill becomes law.
We first contacted Laurie Yorke of Clark, NJ last year after we saw her on-line support group for those that have suffered from the side effects of Paxil and other anti-depressants. Three years ago, Laurie almost lost her then 15 year old son, Ryan due to a reaction to a off label use of Paxil. When Ryan started taking Paxil there were no warnings about suicide, aggression or personality changes. After a year on this drug she watched him change into someone she didn’t recognize. He had gone from a social, A student to a lethargic, confrontational, failing student. It was during that time that Ryan attempted to take his own life. Desperate to find out what was happening to her son, Laurie started doing her own research on the Internet.
It was after doing that research that ABC news reported that the drug’s maker, GlaxoSmithKline, hid clinical trials from the public that showed an increased risk of suicidal thinking and behavior in children and adolescents that were on Paxil. Laurie and Ryan were highlighted in that report. Laurie then started Ryan on a long withdrawal process from the drug. Today, Ryan is doing much better.
In the last year, Laurie has worked closely with Consumers Union’s Prescription for Change campaign to prevent what happened to her son from happening to others. She has joined us in meetings with NJ legislators and has spoken at news conferences in support of legislation that would require drug companies to disclose the results of ALL their clinical studies, not just those with positive results. This legislation would give doctors and the public full information about possible dangerous side effects of medication. New Jersey has recently introduced clinical trial legislation. Over the next year, Laurie plans to work with Consumers Union and other NJ consumer groups to make sure this important legislation passes in her home state.
Susan Zalatan shared her husband Tony’s hospital infection story with the Stop Hospital Infection Campaign and later both became dedicated advocates for a public disclosure law in Colorado. After contracting a staph infection at a Denver-area hospital, Tony spent 54 days in a coma and doctors amputated his left leg, right foot and five fingertips.
Although the couple was physically, emotionally and financially impacted by the infection, they made a commitment to advocate for a disclosure law so that other people would be less likely to get a hospital infection. They testified at public hearings and interviewed with local and statewide media. Their story gave legislators the perspective of living with and surviving a hospital infection. The Colorado Consumer Health Initiative (CCHI) and Colorado Public Interest Research Group (COPIRG) were also part of the Colorado coalition.