Tag Archives: brave

Is Big-Pharma Silencing You?

Every once in a while someone asks me if I’m afraid that Bayer or Johnson & Johnson will retaliate against me for speaking out about the dangers of fluoroquinolones, and specifically the fluoroquinolones they manufacture, market, and distribute–Cipro and Avelox by Bayer, and Levaquin by Johnson & Johnson.

The answer is no.

No, they haven’t done anything bad to me, and no, I don’t think or fear that they will.

Not that corporate pharmaceutical companies like Bayer and J&J haven’t been evil before–they have, and I’m sure they are currently being evil, and will continue to be evil into the future–I just don’t think that they’ll be evil or vindictive toward me.

As a patient, patient advocate, and blogger, I don’t think I’m on their radar. Perhaps I’m naive for thinking that–I just have a hard time believing that big bad Bayer actually cares what little me (Lisa) has to say. In some ways, I wish they did. If they cared, it would be because they felt threatened, and to be capable of threatening big-pharma would be pretty amazing. I don’t think I’m on that level though–for better or for worse.

When I first started this site I asked an attorney how I should protect myself. She said, “always tell the truth,” and “they can’t argue with your story – it’s yours.” Just like my story and truth are valid, your story and truth are valid too. This site has my story, and the stories of others like me who have been hurt by fluoroquinolones. Our stories are true. They are our testimonials. They are what happened to us. No one can take away our experiences, our truths, or our stories. Our stories are valuable beyond measure, and they are making a difference in how people think about fluoroquinolones specifically, antibiotics generally, and even about how pharmaceutical reactions are connected to various illnesses and symptoms.

I want everyone to be empowered to share their story. Stories of pain and injury caused by fluoroquinolones are important and they matter. So, it bothers me when people refrain from telling their stories/truths out of fear that Bayer or J&J will retaliate against them. I can’t know what will happen to anyone in the future, but I can tell you that over the past 4+ years of running this site, having my story of fluoroquinolone toxicity available, and writing about the dangers of fluoroquinolones, neither Bayer nor J&J have done anything bad to me. (And while this means that I’m not as threatening to them as I want to be, it also means that I’m not having my life ruined, and, well, that’s a good thing IMO.)

What bothers me even more than fear-based self-censorship of patients is fear-based self-censorship of scientists, researchers, and doctors. A floxed friend approached a research scientist she knew personally and professionally to ask if he would do some research into fluoroquinolone toxicity, and he declined while flippantly saying something about not wanting to jeopardize his future funding prospects. I have no idea whether or not researching fluoroquinolone toxicity would affect this research scientist’s future funding prospects, but the fact that he fears pharma reprisal, and is willing to overlook horrifying fluoroquinolone reactions in his friend and colleague just to avoid the possibility of big-pharma’s reprisal, is bothersome. Unfortunately, reluctance to take on and question pharma seems common among researchers. As the saying goes, “don’t bite the hand that feeds you,” and so much research (even academic research) is funded, at least in part, by pharmacuetical companies.

Pharma money controls the conversation. They don’t have to make overt threats. They don’t have to ruin the lives of scientists (though they do, as seen in the story of the battle between researcher Tyrone Hayes and big-ag chemical giant Syngenta or the destruction of Andrew Wakefield’s career over his questioning of the effects of the MMR vaccine on the gut biome). They just have to control the purse-strings, and many people will fall in-line.

When research scientists limit the questions that they are willing to ask in order to avoid rocking the pharma boat, they are doing us all a dis-service. There is nothing thoughtful, curious, righteous, or even scientific about failing to research adverse drug reactions out of fear of reprisal from pharma, and drugs will continue to be more and more dangerous if all incentives are for research scientists to look away. I hope that my friend’s friend is unusually timid, and that most research scientists are willing to challenge big-pharma. Though I hope that, I don’t believe it. I believe that most research scientists are falling in-line with what their funders want, either consciously or unconsciously, and that because of biases toward their funders, we, as patients and consumers, are less safe.

I have hope that individuals will get over their fear of big-pharma, and speak out about the harm that they have experienced as a result of fluoroquinolone toxicity or other adverse drug reactions. (Shout your truth – tell your story – it’s empowering – trust me, it really is!) I even have some hope that individual scientists will face their fears and confront their big-pharma funders. But I have less hope that the system of corporate, academic, and even government “science” will go against the big-pharma, big-ag, and big-chemical giants that fund and feed them. It’s too scary. Even if the fear is largely self-inflicted, it’s still too scary for most people to question and challenge paradigms.

When I got floxed, I couldn’t help but question my existing paradigms. A pharmaceutical, an ANTIBIOTIC no less, hurt me. It made me ill for a long time, and there was nothing that doctors could do to help me. I didn’t gain any acknowledgement, support, or solutions from traditional doctors (some people do though, everyone’s experience is different). It made me realize that when the medical system hurts people, they don’t know how to put them back together, and all my assumptions about the ability of the medical system to solve human health mysteries went out the window. I realized that the doctors in the Western medical system have no idea how to treat complex illnesses like fluoroquinolone toxicity (or other multi-symptom, chronic illnesses), and that the patients dealing with mysterious illnesses are largely on their own. When I realized that pharmaceuticals are hurting people and leading to chronic illness, I started to question whether or not the good done by pharmaceuticals is worth the harm. I started to see that many of the illnesses of modernity can be linked to pharmaceuticals (and antibiotics specifically, and fluoronated drugs specifically), as well as the endocrine-disrupting chemicals of big-ag and other corporate chemical companies. My paradigm shifted when I got hurt by ciprofloxacin, so it wasn’t a risk to my world-view to actively criticize Bayer, J&J, or the other pharmaceutical companies after-the-fact. There are many obvious disadvantages of getting hurt by ciprofloxacin and other pharmaceuticals, but a silver lining was that my world-view shifted, and my fear dissipated.

I’m not afraid of big-pharma. Maybe it’s because I’m naive about their power, influence, and ability to ruin my life. Maybe it’s because I’m not a threat to them, and neither of us have any reason to fear the other. But I like to think that I don’t fear them because my world-view doesn’t give them power any more. Of course they have actual power–they have money, influence, and the ability to poison and hurt me, every other human, and the earth–but they no longer have the power of me believing that they are the answer. I don’t believe that they are the answer. I believe that they are the problem. And I believe that challenging them is the right thing to do. I also believe that answers to the problems caused by pharmaceuticals are in the stories of patients who are willing to speak out about what happened to them, and in the willingness of researchers and scientists who are willing to buck-the-system and question the pharma paradigm. Some bravery is required on behalf of both patients and scientists who question and challenge big-pharma. The bravery is worth it though, and others may find, like I did, that there is nothing to fear but fear itself.

 

 

 

Fluoroquinolone Toxicity Stories in the Media

It takes a tremendous amount of strength and bravery to publicly tell one’s personal story of chronic illness and iatrogenic injury, and I am so grateful to those who have told their stories of fluoroquinolone toxicity to the media.

There is often shame around chronic and mysterious illness, and that shame and desire to hide what is “wrong,” often leads people to stay silent about their illness. I commend everyone who has overcome shame associated with illness, and who has spoken out about the harm that fluoroquinolones have caused. (And I also commend those who know that there is nothing to be ashamed of, who shout about what happened as loudly as possible.)

I wanted to take this chance, and use this post, to publicly thank all of the brave and wonderful people who have reached out to the media to tell their stories. They deserve thanks. With every story that gets published in the media (whether in a newspaper, on a website, or on television) comes greater awareness of the dangers of fluoroquinolones, and more compassion for those suffering from fluoroquinolone toxicity.

There are more than 150 media stories about fluoroquinolone toxicity published on the Links & Resources page of Floxiehope.com. Each media story features a person (or two, or more) who has been hurt by Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, or Floxin/ofloxacin. In each media story, a person got vulnerable, and opened him or herself up to risk of derision and rejection from naysayers, so that she or he can speak the truth about the harm that fluoroquinolones cause. Speaking out is not an easy thing to do, and, from the bottom of my heart, I thank everyone who has been featured in a media story.

It would be impossible for me to recognize everyone individually – without a doubt, I would leave someone out – but I want to highlight a few media stories that have been particularly impactful, and the people who made them possible.

Richard Pyne’s story was highlighted in the article “Left paralysed from Fluoroquinolone antibiotic toxicity” that was published on Al Jazeera. “Left paralysed from Fluoroquinolone antibiotic toxicity” notes that:

Richard Pyne’s health reflects a man much older than his 42 years. His world is today little more than the confines of his mother’s house, which he moved to so she could take on the role of his primary carer. Until recently, the Briton lived in his own flat and held down a job, but now, he says, he struggles to walk, to sleep and to live a day-to-day life that doesn’t involve some form of physical distress.

“My health and my life have been destroyed,” said Pyne, speaking to Al Jazeera from his home in Norwich, in England’s East Anglia.

Pyne blames his health crisis, which also includes skin and respiratory complaints, on ciprofloxacin, an antibiotic of the fluoroquinolone drug class. He was prescribed ciprofloxacin – or cipro, for short – to treat prostatitis in January 2016. Far from giving him the new start he wanted, however, the cipro, says Pyne, began to ravage his body within weeks of taking it leaving him effectively housebound.

“I can’t walk properly and haven’t been able to walk properly for over a year,” said Pyne. “My elbows, knees, ankles, pelvic joints, just snap and pop – even my neck.”

Richard’s story makes the article poignant, accessible, and real to the people who read it. The article is impactful because of Richard’s story. Thank you, Richard, for telling your story.

In the PBS Newhour story “Certain Antibiotics Spur Widening Reports of Severe Side Effects” both Jenne Wilcox and John Fratti tell their stories of permanent harm done to them by fluoroquinolone antibiotics:

JENNE WILCOX, patient: I couldn’t even hold my head up. And I was bedridden for over a year. And when I say that, I mean, I couldn’t even get myself out of bed to get into my wheelchair to go use the restroom. I had to be picked up out of bed.

JOHN FRATTI: It caused nerve damage, tendon damage and central nervous system damage. Central nervous system damage is — is brain damage.

JOHN FRATTI: I have lost my job. I have lost over a quarter of a million dollars in lost wages. I have spent about $30,000 out of my own pocket in medical and insurance costs, haven’t received a dime back for this.

Certain Antibiotics Spur Widening Reports of Severe Side Effects” shows both Jenne Wilcox and John Fratti in vulnerable, deeply personal, situations, and it illustrates the pain, disability, and loss that these drugs cause. They are both appreciated for putting themselves out there, in one of the first news stories about fluoroquinolone toxicity (it was aired in 2011).

In the New York Times article, “Popular Antibiotics May Carry Serious Side Effects” the story of Lloyd Balch is featured. It is noted that:

In addition to being unable to walk uphill, climb stairs or see clearly, his symptoms included dry eyes, mouth and skin; ringing in his ears; delayed urination; uncontrollable shaking; burning pain in his eyes and feet; occasional tingling in his hands and feet; heart palpitations; and muscle spasms in his back and around his eyes. Though Mr. Balch’s reaction is unusual, doctors who have studied the side effects of fluoroquinolones say others have suffered similar symptoms.

Three and a half months after he took that second pill, these symptoms persist, and none of the many doctors of different specialties he has consulted has been able to help. Mr. Balch is now working with a physical therapist, but in a phone consultation with Dr. David Flockhart, an expert in fluoroquinolone side effects at the Indiana University School of Medicine, he was told it could take a year for his symptoms to resolve, if they ever do disappear completely.

Thank you, Lloyd, for telling your story! “Popular Antibiotics May Carry Serious Side Effects” was published in 2012, and it has been highly influential.

Roughly 100 local news stories about fluoroquinolone dangers have aired in the last couple years. Each news story features interviews with victims of fluoroquinolones, and everyone who was featured in a local news-story is brave, wonderful, and appreciated! This post would be ridiculously long if I grabbed quotes from each local news story about fluoroquinolone toxicity, and I would undoubtedly forget several people, but I want to give a broad shout-out of thanks to everyone who has been featured on a local news story about fluoroquinolone toxicity. With each of the local news stories came more awareness and compassion, and it led us closer to meaningful change in how fluoroquinolones are perceived and prescribed.

A particularly impactful local news story is “Local woman says popular antibiotic killed her husband” which aired on WSB TV 2 Atlanta. It was shared thousands of times on social media, and I heard that Levaquin prescriptions in Atlanta dropped significantly for months after it aired. You can see “Local woman says popular antibiotic killed her husband” below:

Kathy Dannelly is incredibly brave for sharing her, and Chris’s, story, and her advocacy is appreciated! Jeff Stephens is also brave and his contribution to the news story above is also appreciated!

All the stories of harm done by fluoroquinolones are valuable, important, and poignant. Without people being willing to tell their stories, no one would understand the true nature of fluoroquinolone toxicity – that it is a devastating illness. Because people have been wiling to speak out and tell their stories, more and more people realize the nature of fluoroquinolone toxicity, and many people have been warned and saved from suffering from fluoroquinolone toxicity themselves.

Humans are storytelling creatures. We understand the world through stories. Each and every story of fluoroquinolone toxicity is valuable, and the people who have told their stories to the media so that they could be amplified, are appreciated. Thank you for telling your stories. It’s not easy to do, but it’s valuable, and appreciated.