Two weeks ago I got an email from a woman named Starr, who wanted to share the story of her mother’s death from Clostridium difficile (C. diff) a few weeks ago. Perhaps because Starr’s mother, Teresa Mustain, age 57 when she died, was only slightly older than our mother, who died at 56, I was particularly touched and saddened when I read her story.

But Teresa’s story also speaks to a range of problems in our healthcare system, some related to C. diff and some not. She battled C. diff and a range of chronic conditions from being overweight to being diabetic for more than 18 months. Teresa was treated by Metronidazole for several months before being put on Vancomycin. She was subjected to three surgical procedures in the last weeks of her life. Her children are still unclear as to the exact causes of their mother’s physical decline in the last year and a half of her life.

Teresa’s story also touches on how ill-equipped and unprepared a subset of Americans are when it comes to monitoring and engaging in their own healthcare, particularly when it comes to preventing, managing and reversing chronic conditions, many of which leave us more susceptible to C. diff and a host of other opportunistic infections.

C. diff Story: Teresa Mustain

Please read and share Teresa’s story with your network. There’s much we can each learn from it and in taking those lessons prevent her death from being in vain.

Christian

Chris and I spent the past two days in Washington, DC at the first-ever Selling Sickness: People Before Profits conference organized by patient safety activist Kim Witzcak and anti-medicalization academic Leonore Tiefer. In

Christian with “Selling Sickness” co-organizer Kim Witzcak

short, the conference was amazing and a bit overwhelming. The amazing part was seeing the huge number of activists, academics, physicians, journalists, and healthcare workers come together to take on the extreme dysfunction in the United States healthcare system. The overwhelming part was seeing the extent to which our healthcare system is broken and rather than healing us is too often causing more harm than good.

We are taught by our culture and the media to believe that the US healthcare system is the best in the world, the doctors are as infallible as the Catholic Pope, and that if we submit ourselves to its ministrations, we will be given a pill, a procedure or a device that will “fix” us. Sadly, for a host of reasons, our healthcare system is failing far too many Americans – subjecting us to an epidemic of over-treatment, bad science and costing the US more in dollars than any other post-industrial country while delivering, in many cases, worse outcomes.

Because we are so reliant on the healthcare system, most of us do not want to face how deeply flawed it is, particularly when we or a loved one is ill and vulnerable. Moreover, nearly everyone of us knows people who work in healthcare. We have uncles who are MRI techs, sisters who are nurses, brothers-in-law who are doctors, friends who are pharmaceutical salesmen. The vast majority of them are good, moral people who go to work every day wanting to help the sick and suffering but the corruption in our system hobbles our best intentions.

Since I can’t possibly do justice to the entire conference in this blog post, I want to share a few highlights of the people we met and stories we heard. The conference organizers will be making session materials available next month and we will post a link to them then.

• Dr. John Abramson of Harvard moderated an eye-opening roundtable of researchers and scientists critiquing the way new drugs are approved by the Food and Drug Administration. About 85% of all drug clinical trials are now funded by the companies that developed the drug. This is an obvious conflict of interest made worse by the fact that 45% of the funding for the FDA comes from the fees companies pay to have their drugs, devices and procedures approved. In real terms, this leads to drugs and devices that are ineffective and/or harmful being marketed to doctors and hospitals who are often ignorant to the truth behind the false advertising claims made by the manufacturers. Check out Dr. Abramson’s book, “Overdosed America”, for the full scoop on the dangers in our current approval process.

• I met Allan Jones, a former health investigator in Texas, who blew the whistle on state employees who were getting kickbacks from the drug industry to promote expensive antipsychotic drugs to foster children and other wards of the state. For his trouble, Jones was fired, but kept on working until Johnson & Johnson was forced to settle the case for $158 million. In talking with Jones, he told me that he had just recovered from a four-month battle with a clostridium difficile infection that nearly killed him.

• The “From Grief to Action” panel hit home for me. It featured Helen Haskell of Mothers Against Medical Error, who lost her 15-year-old son Lewis in 2000; Dan Walters, whose wife suffered terrible injuries to her heart when an intern was allowed to perform a new surgery unbeknownst to them; Sara Bostock, whose daughter committed suicide while on an SSRI; and John Fratti, a former pharmaceutical sales rep who suffered neurological damage from using the antibiotic Levaquin. Author Rosemary Gibson moderated the panel. While each of their stories is unbelievably painful to hear, they have all made amazing contributions to advancing patient safety in their own way. Helen has passed Lewis Blackman Hospital Safety Act in 2005 in her home state of South Carolina, among her many accomplishments. Sara was pivotal in creating a website, SSRIStories.com that compiles the harm caused by antidepressants. Dan published an excellent book, “Collateral Damage”, that details how his wife was harmed. John created a blog, Levaquin Hurts, and even purchased stock in Johnson & Johnson so he could tell his story at the company’s shareholder meetings. The most touching moment for me came when Rosemary asked the panel how they manage to keep doing this work after so many years. Helen simply replied that she couldn’t stop if she wanted to; losing her son was so painful that advocacy was a necessary reaction (and distraction) to her own grief and suffering.

• During the “Hijacking Patient Empowerment” session,  Rosemary Gibson gave a stirring presentation that highlighted the similarities between the mortgage crisis that blew up the world economy in 2008 and the current crisis in healthcare in terms of harm caused, lack of transparency and inflated costs, that should worry every American.

• Our good friends, Patty Skolnik and Pat Mastors, held a great session on building allies among doctors, administrators, politicians, executives in order to effect change within the system in addition to exerting pressure from outside the system.

There were many other amazing panels, sessions and people that we met during the conference. I’m proud that The Peggy Lillis Memorial Foundation was a co-sponsor of Selling Sickness and look forward to keeping all our supporters informed about the great things that result from it.

Last Tuesday, I had the great privilege of being part of an all-day meeting on eliminating hospital acquired infections (HAIs), including clostridium difficile (C. diff) at the Centers for Disease Control in Atlanta. The meeting was arranged by the CDC in partnership with Consumers Union’s Safe Patient Project, of which the Peggy Lillis Memorial Foundation is a member. It brought together several patient safety activists and more than 20 CDC experts including several senior staff members, including Dr. Denise Cardo, head of Health Quality Promotion, and Dr. Cliff McDonald, Chief of the Prevention and Response Branch of Health Quality Promotion and the CDC’s leading expert on C. diff.

I’m still processing all the information we learned and all the ways that the foundation can work with the CDC. But I left Atlanta full of incredible hope and extremely proud of all the hard work we’ve done to get us to this point. Sitting next to Dr. McDonald and listening to an amazing coterie of experts, each of whom had incredible passion for eliminating HAIs, was both humbling and inspiring.

Perhaps the most energizing aspect of the meeting was seeing how upset the CDC staff were by the growth in death and harm caused by HAIs. Many doctors who work for the CDC  came to it before the modern patient safety movement, most often spurred on by the failure of the institutions where they worked to reduce avoidable harm. Some were frustrated by the fact that HAIs are a largely preventable problem and the primary reasons we haven’t eliminated them is not lack of knowledge but of  resources, particularly financial resources, and the political will to insist that the healthcare industry do better. One staff member became visibly angry when discussing the rampant nature of HAIs in nursing homes. These are not bureaucratic “drones” that government employees are often portrayed as in the media. Nearly every single person I interacted with was committed to saving lives.

Early on in the meeting, Dr. Cardo said, “We are all patients.” The truth of that statement reverberated throughout the auditorium. No matter our current health status, at some point every single American is a patient. Shortly after the meeting began, the head of the CDC Dr. Thomas Frieden came to speak to the group. Though Dr. Frieden was only supposed to spend ten minutes with us, he actually remained for over a half-hour engaging in conversation and answer questions. Dr. Frieden was unequivocal in saying “healthcare associated infections are unacceptable.” Frieden was also clear that we need to develop systems within healthcare that compensation for human error. He said, “it’s not about getting people to be perfect. It’s about getting systems and fail-safes in place that prevent harm.” Finally, Dr. Frieden emphasized the importance of patient’s stories, saying “we need to see the lives and faces behind the numbers” if we’re going to make progress.

As the day progressed, there were many excellent conversations and brainstorming sessions. Highlights of the rest of the day include:

• Learning the the CDC has three main goals around HAIs: Improved adherence to their guidelines by healthcare providers; increased surveillance and tracking of HAIs, and increasing the capacity of state health departments since healthcare is “primarily a state affair.”
• Hearing that one of the CDC’s key challenges is that public health has “no natural feedback loop”, so they have to engage patient groups to assess how they’re doing.
• Learning about the stark public health challenges caused by the rise of ambulatory surgery centers, a full 80% of which are not owned by a hospital (even when they are physically located on a healthcare campus) and only 25% of which are accredited by the Joint Commission (which accredits hospitals). These facilities are often staffed by per diem nurses, radiologists, and anesthesiologists, making it very difficult to ensure consistent and high-quality care.

Finally, a significant part of the meeting was set aside for a discussion of C. diff. The CDC staff seemed particularly perturbed by the lack of progress made in stemming the growing tide of death and harm it causes. There was acknowledgment that prior to 2000, C. diff was largely seen as a “nuisance” infection with a low death rate. But since the CDC began surveillance, they have noted (as many public health experts have) the increasing rates of death and harm caused by C. diff. One CDC expert said that C. diff is the “poster-child” for the “portability of HAIs” (or the ability for infections to be transferred from one patient/healthcare worker/facility to another and even into the community). Since the meeting, PLMF has been in touch with several CDC staff member and we look forward to working with them to increase our mutual impact in minimizing death and disability arising from C. diff.

Ricky is a 25-year-old man living in Los Angeles, California. I became acquainted with him through a Facebook C. diff Support Group.

Ricky Spiese

Ricky’s story is unique and interesting for a number of reasons. First, Ricky’s convinced that he was colonized by C. diff while visiting his late grandmother in a nursing home.  He notes that, while she had been diagnosed with C. diff, at no point did the nursing home staff warn him or his other family members to take sanitary or hygiene precautions.

Second, Ricky’s C. diff infection was set off, not by the oral antibiotics typically associated with CDIs, but by using Cipro eye drops.

Third, Ricky’s mother figured out that he was suffering from C. diff by reviewing his grandmother’s medical records and realizing the connection between her mother’s illness and her son’s.

Finally, Ricky spend months and thousands of dollars trying to cure himself of C. diff. Eventually, he and his gastroenterologist decided he should have a fecal transplant.  Inexplicably, the hospital where the GI doctor was affiliated refused to approve the procedure, so Ricky ultimately ended up doing an enema-based fecal transplant at home!

Please read and share Ricky’s story to help us raise awareness.

Ricky Spiese’s C. diff Story

While the statistics around rising Clostridium difficile (C. diff) infections throughout the United States are grim, in this post I want to highlight three organizations that are making great strides in reducing infection rates.

More than anything these three organizations prove that the status quo is not only unacceptable; it’s also unnecessary. With the proper investments in environmental services, staff training, patient education and tracking, we can make significant and tangible progress in lowering the rates of C. diff colonization, infections and deaths.

Here are the 3 Rock Stars:

1) The University Hospitals Bristol decreased the number of C. diff cases by 90% over the past 5 years, from 364 in the period from April 2007 – March 2008 to 54 in April 2011 – March 2012. Key to UHB’s success is an enormous change in how they think about C. diff and other infections.  According to Christine Perry, trust director of infection and disease control, “Up until five or six years ago, people thought that because you were elderly or had a chest infection and were on antibiotics, you would get an infection such as C. diff. Now people see it very differently, that infections are preventable.” The importance of believing that progress can be made in the fight against C. diff cannot be overstated.

2) The Illinois Department of Public Health kicked off a new statewide education campaign in June to educate health care workers and hospital staff about C. diff prevention. The Illinois Campaign to Eliminate C. diff (ICE C. diff) will include educational webinars and regional meetings through a partnership with IFMC-IL, the state healthcare quality improvement organization. As of March 6, 137 facilities statewide have signed up for the program.

3) In Ohio, Anderson Hospital in Cincinnati is reporting great results in reducing hospital acquired infections, including C. diff, through implementing a new technology that uses ultraviolet light to eliminate harmful bacteria. The technology, called IRiS (Intelligent Room Sterilization),  has been used by the environmental cleaning team at Anderson (who refer to it as the “Germinator”) since last summer and has resulted in a 32 drop in the rate of C. diff infections in the past year. Again, statements from the executives at Anderson reflect a shift in mindset that is crucial to our long-term ability to save lives and money. “We already do a tremendous job of reducing the risk of infection to our patients, but we want to do everything we can to provide an even safer environment,” said Gayle Heintzelman, site administrator at Clermont Hospital, the sister organization to Anderson. IRiS is distributed by Medline Industries.

Certainly, there is much more work that needs to be done by healthcare executives, physicians, hospital workers and patient advocates to reverse the current trends. But it’s vital that we educate both those who work in healthcare and those receiving those services that change is possible and laud those organizations that are showing the way.

Help us to spread the word that C. diff is a solvable problem by sharing this post with your network.

Though the news about Clostridium difficile (C. diff0 infections has been grim of late, there are several things that you can do to protect yourself and your loved ones. A recent report by the Centers for Disease Control and Prevention noted that, contrary to the common wisdom, most people acquire C. diff, not in the hospital but in medical settings such as nursing homes, doctors’ offices, and outpatient centers.

However, as WebMD stated shortly after the report came out, here are 5 ways you can be proactive in protecting yourself:

1) Use antibiotics appropriately and only when necessary. Per WebMD, “Antibiotics are lifesaving medicines, but do much more harm than good when you don’t need them. Don’t beg your doctor for an antibiotic prescription if he or she doesn’t think you need one.”

2) Tell your doctor if you have been on antibiotics and get diarrhea within a few months.

3) Wash your hands — carefully — after using the bathroom.

4) If you have diarrhea, try to use a separate bathroom from the rest of the family. Be sure a bathroom is cleaned well if someone with diarrhea has used it.

5) If you are a caretaker for a person with C. diff infection, wear gloves during active treatment. Then clean your hands thoroughly. If the patient is using the bathroom, clean it well with a bleach solution.

Being smart and careful as a patient and caretaker can make all the difference!

Read the full report from the CDC: Making Health Care Safer – Stopping C. difficile Infections

I just returned from the Mid-Atlantic Researchers Conference (MARC) at George Mason University in Fairfax, Virginia. The conference is an annual gathering of people from my “day job”, fundraising research. I have attended and presented workshops at MARC many times over the years and always enjoyed it.

This year was a bit different. Last month, an I published an article in Connections, the journal of the Association of Professional Researchers for Advancement (APRA), which is the professional association that organizes MARC. The article, which I will be sharing excerpts from on here in the near future, was about how my career in fundraising research helped us to start the Peggy Lillis Memorial Foundation. Since the article was published pretty recently, I thought I might get some congratulatory comments from conference attendees that head read the piece, but that would be the end of it.

I wasn’t prepared for two of the women at the conference to come up to me and “out” themselves as C. diff survivors.

The first woman was involved in the planning of the conference and she approached me as I was getting ready for my presentation (which was completely unrelated to C. diff or the foundation). She told me that she had hesitated to bring it up since she was afraid discussing my mother would upset me right before my presentation. I told her I love talking about my mother, no matter the circumstances. That’s when she told me that following a surgery a few years ago, she came down with C. diff. Though she was sick for a few weeks she did recover. This woman is in her 30s and otherwise healthy. Not the “typical” C. diff patient.

The second woman attended my presentation. While giving the audience a brief overview of my career, I mentioned the foundation. Later, we both ended up in a group that went to dinner together. This woman sat next to me and during dinner she told me that she got C. diff after giving birth to her first child. She told me that she was extremely sick for 5 months and was misdiagnosed at first. Her OBGYN didn’t think it was related to her giving birth and her primary physician thought it was IBS. Ultimately, she lost more than 25 pounds and spent the her first few months as a new mother desperately ill. She thanked me for the foundation’s work and said she will probably send us her full story to help build awareness.

I am struck by the fact that at a conference of 200 people, 2 young women, who were otherwise healthy, both had fought C. diff. It makes me wonder how many others are out there – undiagnosed, misdiagnosed and suffering, possibly dying because of old stereotypes and the dearth of knowledge among the public.

Despite the common wisdom of most doctors and patients that clostridium difficile is primarily a threat to elderly, hospitalized people, recent studies indicate that not only are cases of “community-onset” C. diff growing but they are more likely to result in surgery and other serious complications.

In April, the Infection Control and Hospital Epidemiology journal published a study from the Centers for Disease Control, that found people who developed a C. diff Infection outside of the hospital setting were four times more likely to require a colectomy (surgical removal of the colon) than those who developed symptoms while hospitalized. And people 65 or older are at even higher risk.

People in the community, including those living in nursing homes or recently treated in physicians offices, were previously thought to be at low risk for C. diff.  The CDC study showed that up to 75% of all C. diff infections show up in community settings.

The combination of increased infection rates and a larger percentage of people becoming symptomatic outside of a hospital speaks to the growing trend and severity.

While the study doesn’t speculate as to the reasons why community-onset cases more frequently lead to colectomy, from my own experience, I suspect the following reasons:

• Unlike MRSA and pnuemonia, the public is largely ignorant to both the existence and danger of clostridium difficile infections.
• Therefore, people who become symptomatic outside of the hospital are likely to assume that their symptoms (diarrhea, fever) are the result of a virus or food poisoning and delay treatment.
• Many physicians and healthcare providers working outside of hospital settings hold outdated notions of what a “C. diff patient” looks like (i.e. elderly, hospitalized, immuno-suppressed) and, therefore, miss the tell-tale signs.
• Finally, there is a new, hypervirulent strain of C. diff that has emerged wherein the toxins produced by the bacteria are much stronger and cause great damage to the patient more rapidly than older strains.

To protect yourself and your loved ones, keep in mind that C. diff symptoms can appear long after your last hospitalization, visit to a nursing home, or doctor’s office. Remain vigilant for C. diff symptoms in anyone who has recently been in a hospital or healthcare setting, particularly if they are taking or have recently taken antibiotics.

You can read more here:

Vital Signs: Preventing Clostridium difficile Infections.  (free registration required)

Community onset Clostridium difficile linked to higher risk of surgery

Monday’s Wall Street Journal had an excellent article showcasing how Hunterdon Medical Center in New Jersey has made enormous strides in controlling clostridium difficile and other healthcare associated infections.

It’s definitely worth reading the whole article, but I want to highlight just how successful Hunterdon has been. From 2006 to 2011, the hospital:

• Cut its rate of C. diff infections by 79%
• Reduced MRSA by 66%, and
• Dropped its vancomycin-resistant enterococci (VRE) rate by 23% last year

This is great progress that is undoubtedly saving hundreds of patients from needless suffering and even death.

These gains are not the result of luck but of concerted effort and investment by Hunterdon:

Prompting Hunterdon to overhaul its methods was a growing threat from a strong strain of C. diff in 2004. At highest risk for C. diff are patients, especially older adults, who are on antibiotics for other infections. The drugs destroy good germs that protect against infection for several months, during which time patients can get sick from C. diff picked up from contaminated surfaces or spread from a health-care provider’s hands.

The hospital began isolating patients who had contracted C. diff and asked doctors to restrict the use of the antibiotic Cipro. But it was becoming clear that spores could survive for weeks, even on a doorknob. Alcohol-based hand sanitizers didn’t kill C. diff, and hand-washing wasn’t sufficient.

So the hospital adopted new, stronger soaps containing the antiseptic chlorhexidine for staffers and patients. Cleaning crews began using bleach and a more potent form of hydrogen peroxide. Rooms were scrubbed as never before: In rooms where C. diff patients had been treated, even the curtains were taken down and cleaned.

Ms. Nash coaches cleaning staff on the importance of disinfecting “high-touch” surfaces on which germs can linger. One current focus: the remote control devices whose buttons allow patients to watch TV or call a nurse. Cleaning staff are encouraged to speak up if they feel they are being rushed to clean a room.

The visual checks traditionally done to confirm a room was clean “are no longer sufficient,” says Ms. Roye-Horn.

The Hunterdon team conducts random audits with the swabbing device on about 300 surfaces a month. Some 95% to 100% of checks get a passing grade, up from 75% when the hospital acquired the device in 2009.

Effectively combating healthcare associated infections costs money. In addition to hiring additional staff, including more cleaners, Hunterdon has spent hundreds of thousands of dollars over the past 5 years to upgrade its infection surveillance and control technology. Given than the average extended stay or readmission for an infection like C. diff can cost over $30,000, investing in prevention is increasingly seen as cost-effective.

What Hunterdon proves more than anything, is that change is possible. That smart investment in staff, training and upgraded infrastructure to monitor and prevent healthcare associated infections can stave off needless pain, suffering, and even death. And those of us who have lost someone to an HAI know you can’t put a price on that.

Behind One Hospital’s Fight Against Deadly Infection, Wall Street Journal

Peggy with her sons, Liam (r.) and Christian

In 1995, I went to England with my best friend, Cindy. And while I was in England, something happened that has long been a favorite “Mom” story.

My friend Michael, who was not a terribly butch guy and pretty slim, had been dating a guy named Christopher for several months. Christopher, who was a complete asshole, was also about 6’3, lanky but built, and had a reputation for being a badass. Michael had let Christopher move in to his apartment in Starrett City.

One night while I was in England, Michael called my house in a panic. My mother answered the phone and quickly set about figuring out what was wrong.

Michael: Can I come spend the night at your house? Christopher is being mean to me.

Mom: Why don’t you just tell him to get out of your house?

Michael: I can’t. I’m afraid of him.

Mom: Well, I’m not going to let you be afraid in your own home. Stay put. I’m coming over.

Mom told Liam what was going on and asked him to come with her “just in case.” Liam was 18 at the time, significantly less tattooed, but an actual bad ass.

When they arrived at Micheal’s apartment, my mother turned to Liam and said: “You hang back, because if I hit him it’s self defense, but if you do, it’s assault.”

Michael answered the door visibly upset. Mom told him to hang out in the hallway with Liam while she handled Christopher.

Being a single mother, mom had long slept with an aluminum baseball bat under her bed. When he was a teenager, Liam had written “peacemaker” down the side of it in permanent market. She had brought this same bat with her, “just in case.”

She entered the apartment and turned the corner into the living room where Christopher was lying on the couch in his boxer shorts talking on the phone.

Mom looked at him and smacked the bat on the floor three times to get his attention. Christopher looked up at her with his eyes wide.

Mom said: “YOU. Get up. Get your shit. And get the FUCK out!”

Christopher yelled into the phone, “Holy shit! There’s a crazy lady here with a bat. Call the police.” And hung up.

Mom said: “We don’t need the police. I’m not going to hurt you as long as you get your shit and get out.”

She watched while Christopher gathered his things and got dressed. Meanwhile, the police arrived.

With Liam and Michael now in the apartment, Mom went into the hallway to talk to the cops. With two brothers who were cops, she explained that her son’s friend was being bullied by this big guy who refused to leave his house. The cops then entered the apartment and escorted Christopher out.

Weeks later, I was out at a club with my friend Erik. Christopher was there, and Erik got nervous. (He’d never been in a fight.) When Erik suggested we leave, I said:

“Erik, he’s afraid of my mother. If she chased him out of Micheal’s house with a baseball bat, what would she do if he even looked at me the wrong way???”

Of all the videos that we’ve made, this is the hardest one for me to watch. Reliving the last week of our mother’s life is just enormously painful.

Peggy's Graduation from Kingsborough with her sons, Christian and Liam

But, it does make me incredibly proud – as I’m sure it does our mother – to watch Liam’s determination to tell our mother’s story, despite not being very comfortable with public speaking.

I like to think that in watching how close her death brought me and Liam that Mom is smiling and filled with pride. When we would fight as kids, Mom would settle us down and then make us sit right next to each other.

“All you have in this world is each other”, she would say. “One day, I’ll be gone and you don’t have 7 other siblings to choose from like I did growing up. You have to love each other and take care of each other.”

While I’m certain she expected it to matter much later in our lives, Mom’s commitment to Liam and I having a close and strong relationship has certainly paid off.

Please do watch this video and share it with others. It’s full of potentially life saving information.

As hard as it is for me and my family to believe, we are coming up on the second anniversary of my mother, Peggy’s, death. Still, with the anniversary looming, it seemed like a good time to share this video that tells the story of how and why we founded the Peggy Lillis Memorial Foundation. Please check it out and share it with your friends and family, so we can spread the word that smart, compassionate people can make a difference in the fight against C. diff and other hospital-acquired infections.

The antibiotic clindamycin has long been strongly correlated with clostridium difficile infections. In fact, as far back as 1998, the Veterans Affairs Medical Center at Virginia Commonwealth University did a study proving that restricted use of clindamycin, not only reduced the incidence of C. diff among patients but also reduced the overall cost of treatment.

I have deep ambivalence about clindamycin use since my mother’s death from C. diff began with her being prescribed it for a dental procedure. Prior to my mother’s death, like most people, I didn’t question the necessity or efficacy of the prescriptions given to me by my doctors. Occasionally, I worried about possible side effects, but that was more a vague concern than a true fear. All of that changed in April 2010, with my mother’s death.

It’s no secret that antibiotics are widely overused. Studies show that American children will, on average, receive 20 doses of antibiotics before their 18th birthday. And, for upper respiratory infections in adults, which are largely caused by viruses, as many of 40 million unnecessary and ineffective antibiotic prescriptions are written every year. These unnecessary prescriptions can not only cause long term harm to our individual bodies by permanently damaging our intestinal flora, but our combined overuse is making infections like C. diff and MRSA stronger and more resistant to the treatments we have.

So what does all this have to do with the cute, little mouse over there?

A recent study by a research team at Memorial Sloan Kettering Cancer Center in New York City showed that a single dose of clindamycin wiped out 90% of bacteria types in mice intestines. While we mostly think of bacteria as something to be avoided, our gastrointestinal system relies on billions of good bacteria to digest food and protect us from harmful bacteria like C. diff. In fact, the bacteria in our guts is a huge part of our body’s overall immune system. By eliminating 90% of the bacteria in the study mice’s intestines, just one dose of clindamycin left them “unusually susceptible” to C. diff.  The infected mice “developed severe weight loss, and had a mortality rate of roughly 40 percent.”

Worst of all, the bacterial flora in the mice’s intestines did not regenerate. Martin Blaser, chair of the Department of Medicine at NYU Langone Medical Center, recently posited that the long term damage caused by antibiotic use may be fueling the epidemic of C. diff and MRSA transmission that costs tens of thousands of lives every year.

Does this mean we shouldn’t take antibiotics? No. Antibiotics are one of the greatest medical advancements in our history.  But it does mean that physicians should be upfront with those they’re treating with regard to the dangers inherent in taking these drugs. Every day hundreds of Americans die from C. diff infections and among those who survive many report not being told about the risk. Further research may indicate that treatment with clindamycin and other antibiotics require an aftercare plan to restore a patient’s bacterial flora.

At a minimum, physicians and patients should have an open and informed dialogue about the risks and benefits that come with using antibiotics. In some cases, antibiotics are clearly necessary. In others, it’s more of a judgment call. Patients should know that taking antibiotics for a minor bout of bronchitis is an option. But so is rest and fluids.

Americans should be engaged partners in their healthcare. But to do so we need to give up the myth that drugs like clindamycin are a panacea, confront the reality that all drugs carry some risk, and have physicians that are willing to engage in frank conversations about our treatment.

I met Amy Burke and her husband, Peter, shortly after we started The Peggy Lillis Memorial Foundation in the fall of 2010. A doctor that was an early booster for the foundation asked if we had encountered any women who had acquired C. diff after giving birth. At that point, we were still seeing what happened to our mother as an outlier of an epidemic that was largely impacting elderly and already immune-compromised people. Hearing Amy’s terrifying story of becoming infected with C. diff following the birth of her daughter, Lily, was eye-opening.

I had dinner with Amy and Peter at a lovely Italian restaurant in Greenwich Village. It took Amy a while to warm up to me and gather the emotional strength to tell her story. Amy’s story is one of a healthcare professional who had spent her career treating pregnant women, a woman who wanted to give birth at home and had her plans torn asunder, and a mother who saw what was supposed to one of the most beautiful events in her life turn into a fight for her life. It is also the story of a couple who, feeling betrayed by traditional medical treatment, sought novel, holistic and, ultimately, successful approaches to treating Amy’s C. diff infection.

The data on the number of women who experience a C. diff infection during or following pregnancy is scant. Since the United States lacks a mandatory and uniform method for reporting C. diff infections both in hospital settings and in the community, it’s impossible to know the scale of C. diff infections in pregnant and postpartum women. But what we do know is very troubling.

Beyond Amy’s experience, there have been a number of recent small scale studies in the US and Canada suggesting that not only is C. diff a real danger for new mothers, but it is also a potentially deadly complication of giving birth in a hospital. In 2006, Dr. Judith O’Donnell of Drexel University reported on six cases of women with “community acquired C. diff” – three of whom were pregnant at the time, one of whom had recently given birth, and two who had recently had elective hysterectomies – but were otherwise generally healthy.

The outcomes for two of the patients were devastating: one died following a total colectomy (surgical removal of her colon) and 14 days of antibiotic therapy, and another was placed in intensive care for sepsis but ultimately recovered. Sadly, the study was unable to determine how and when the women acquired clostridium difficile – whether they were truly “community-acquired” or were colonized at some point during their medical treatment.

Amy’s story is truly heart breaking. While a bit longer than most of our “C. diff Stories”, I ultimately left it as written since it provides not only a medical case study, but also a glimpse into the fear and anger that plagued Amy during her fight against C. diff. Please click on the link below to read Amy’s story.

C. diff Stories: Amy Burke, DC

Amy Burke, Peter Lambert and their daughter Lily

I was sent the video below today, which was produced by Dr. Michael Greger, the director of Public Health and Animal Agriculture for The Humane Society of the United States. Since our founding, The Peggy Lillis Memorial Foundation has been raising awareness of clostridium difficile and the danger it presents to the public and we have primarily focused on people becoming infected in hospitals and the community.

Dr. Greger’s video shines the light on a new avenue where the public can acquire C. diff: Supermarket meat. I urge you to watch the video and share it with your networks.

1. 42% of sample supermarket meat contained toxigenic C. diff bacteria. In May 2009, a join study by the Centers for Disease Control and Prevention and the University of Arizona tested cooked and uncooked meat purchased at supermarkets. They found that 42% of the meat tested contained the bacteria, indicating that meat consumption may play a role in inter-species transmission of C. diff. The riskiest meat was ground turkey.
2. The timeline between consuming C. diff infected meat and becoming symptomatic could be years. C. diff is a very hearty bacteria that can live virtually undetected in your gut. Usually, though not always, the good bacteria in our guts keeps the C. diff in check. But taking certain antibiotics, some chemotherapy treatments and illnesses of the immune system such as HIV and multiple sclerosis can cause an imbalance in your gastrointestinal immunity allowing the C. diff to run rampant. C. diff infections can lead to life threatening conditions, including pseudomembraneous colitis and toxic megacolon.
3. Recommended cooking temperatures and times may not kill C. diff. Because it is a spore, C. diff can survive for up to two hours at the recommended internal temperature of 160 degrees Fahrenheit (71 degrees Celsius).
4. Alcohol-based hand sanitizers to do not kill  C. diff. As you’re out and shopping, you may touch uncooked meat and trying to be safe, use a hand sanitizer. But studies have repeatedly shown that alcohol based hand sanitizers do not kill C. diff. Only hand washing will remove the bacteria.
5. C. diff may be spread by a simple handshake. As we get ready for Superbowl Sunday, many Americans will be grilling. It’s important to keep in mind that C. diff from contaminated meat can be spread by a warm handshake, if you’re not washing your hands thoroughly.

So what can we do? The best defense against C. diff is washing your hands thoroughly, particularly if you’re been in a healthcare facility or are handling meat. Beyond that, being informed about the risk factors for C. diff such as antibiotics usage – so you can get treatment right away if you display C. diff symptoms - are key. Finally, we must ask more of the FDA and other regulatory agencies that are responsible for keeping our food supply safe.

Watch Dr. Gergen’s video: