Change Will Come

Ruth wrote this guest post. You can read Ruth’s story of fluoroquinolone toxicity in “Ruth’s Story – Cipro Toxicity.” You can also listen to Ruth’s story through her episode of The Floxie Hope Podcast. THANK YOU, for sharing your insight and wisdom, Ruth! 

There was a long period of time after I got floxed that I despaired of anything ever changing in the medical field. I didn’t think doctors would ever change their prescribing habits regarding fluoroquinolones and people would continue to be harmed as I was, until the end of time, basically. But I recently had an epiphany that brought the realization that not only will the overuse of fluoroquinolones stop, it is inevitable that it does stop.

It is true that America’s FDA is doing a poor job of keeping the public safe from bad drugs and faulty medical devices. But I believe that even if the FDA does not become the watchdog it should be, the needed changes regarding fluoroquinolones will come. Probably not as soon as any of us would like, but they will come.

Every summer I work as a pyro technician for a display fireworks company. I have to undergo training for this. I am kept abreast of the requirements of the ATF, our own industry, and our company. Our own company is stricter than the legal requirements as regards safe distances for spectators. Our own industry has made recommendations to improve safety which are also stricter than what the ATF requires. Sometimes these requirements can seem burdensome or inconvenient.

Why would a fireworks company and professional organizations made up of pyro technicians create their own stricter regulations, when it would be easier to just stick with whatever is legally required? Because sane and rational people want to keep the public safe. Yes, we want to put on a good show, make some money and no one in this world actually wants to have to work harder– but at the end of the day no sane and rational person would want to be responsible for injuring another human being.

I believe the doctors themselves and others working in the medical industry will in the end solve this problem, whether or not the FDA ever wakes up and provides some regulations for use of fluoroquinolones that have some teeth. I believe even the drug companies will reluctantly come around due to social pressure or fear of litigation. I believe this because if it happened in one industry it can happen in another.

New and stricter regulations regarding the transport, handling and use of display fireworks have been met with resistance. I don’t want to paint a picture that says every time a new rule is added everybody is happy about it and immediately gets on board with it. But I have heard the arguments for continuing the old ways and I know why they aren’t holding up, why changes are happening despite opposition. The arguments against changing how fireworks shows are done are the same ones that are used against changing how fluoroquinolones are prescribed. They are all flimsy arguments. Here’s my list:

  1. We’ve always done it this way.
  2. It’s easier to do it this way.
  3. It’s cheaper to do it this way.
  4. I don’t believe this really makes a difference for safety, because I personally have never seen anyone get hurt doing it this way.

Let’s take these one at a time:

We’ve always done it this way” simply does not hold up when the science says what you have been doing is not safe. In both industries those advocating for safety have science on their side. Also, it is mainly the older pyros and older doctors using this argument. As they retire, and young people coming in are trained in a different way, this argument will simply disappear. I have had young pyro technicians come to me and say that an older person on the crew showed them how to do something that was inconsistent with training they received. I confirm that they have to do it the way they were trained and I never get an argument from them.

The more experienced person may continue to argue on the basis of, “I have always done it this way,” but the younger person will distrust anything that goes against the training he or she received. I have heard of some medical schools today teaching about fluoroquinolone toxicity syndrome and cautioning students to avoid using FQ’s unless really necessary. These are second and third hand accounts, but if they are true this is a huge win for us.

Some of the older pyro technicians, sad to say, take themselves out of the picture by choosing to continue doing things that we know today are not safe. Doctors who simply refuse to believe in the dangers of fluoroquinolones and take those drugs themselves also may learn the hard way. I’m not saying people getting hurt should be celebrated, absolutely not, but every time the lesson is learned the hard way it is still learned.

It’s easier to do it this way,” does not fly either in the face of how much people can be harmed. In one case we are talking about explosives that, if they don’t go off in the sky where they are supposed to become actual bombs on the ground, and in the other case we are talking about medications whose side effects have been described many times as being like a bomb going off in the person’s body. The amount of voices speaking out on the horrors of fluoroquinolone toxicity helps our case because after people have read our stories they don’t want to risk FQ toxicity no matter how much the doctor may claim Cipro has a great record of safety and efficacy.

The informed patient is going to request that the doctor culture the infection and prescribe accordingly, rather than just prescribe the broad spectrum antibiotic because it is easier. Patients are refusing to take the atomic bomb of antibiotics when they might not need an antibiotic at all. Being handed Cipro and sent on your way without even knowing for sure you have an infection is not going to continue to be accepted medical care. Those of us who speak out to our friends and post about this here at floxiehope and on social media are part of that change, and we can feel good about that. The dangers are becoming known.

Customers can and do drive changes that improve safety. For a recent fireworks show we were informed that the sponsor had requested we follow recommendations by our own industry for distance between loaded mortars. They were actually asking that we follow California’s standards, even though the show was shot in Wisconsin. What reason could we give for not doing what the customer asked? It’s easier to be able to load all the mortars right next to each other in the old style racks than to skip tubes or use the newer ones that have the required spacing? That would have been our only reason to refuse that request: It’s easier to do it the old way.

But the sponsor was making the request because he wanted as safe a show as possible. When patients make requests of their doctors because they want to be as safe as possible the doctor cannot really make any argument that is going to hold up as to why he should not honor those requests. Today we are seeing customers of display fireworks companies taking the time to inform themselves about our industry and what we do! How much more so are patients today taking the time to become informed? In both cases it is happening because the Internet makes information about any subject easily available. When we speak out about our reactions to fluoroquinolones we are helping provide valuable information for others.

It’s cheaper to do it this way,” may seem to be a logical reason to resist changes. After all, companies need to watch their bottom line. But when it comes to a question of money or public safety, the need for public safety will eventually win. There may be a period of time during which companies can make some money while risking the health and safety of other human beings, but eventually that time will end.

People have a desire for self preservation. Whether it is pyro technicians experiencing danger from low breaks, round trippers and finale racks blowing up or patients experiencing or reading about bad ADR’s to a drug, people are going to run the other way when their life or health could be put in danger. Fireworks companies that buy cheap but unreliable product lose workers and have difficulty selling more shows without crews to put them up. Hospitals that use fluoroquinolones for every little thing lose informed patients. If I needed surgery I know where I would go for it, because I know of hospitals (a couple) that do not use fluoroquinolones. If I had to pay out of my own pocket I would do it, because my health and safety is that important to me.

I know of display fireworks companies that are now out of business after consistently focusing on the bottom line instead of safety. I believe the same will hold true for medical facilities, doctors and even drug companies that continue to put money ahead of human health and safety. The display fireworks company I now work for tests all their product and they spend extra money to get product that is going to perform as it is supposed to. They are rewarded for this not only with greater customer satisfaction for some really beautiful shows, but they attract more workers. Pyro technicians would rather work where they feel safe and know they are not putting members of the public at unnecessary risk.

I think the same holds true in health care. I used to work for a medical staffing company in physical therapy. Some companies I temped for definitely cared only about the bottom line, with very high productivity standards. I was so rushed that I knew I was not really able to provide good care, and that put patients and myself at risk. I stopped taking jobs for those companies. Companies that had compassion for both their patients and employees attracted the best workers and could even pick and choose, selecting the cream of the crop of therapists, doctors and nurses. Patient satisfaction went up. While some of the companies that had pushed so hard for productivity were being bought out, the companies that I most preferred to work for were thriving. Decisions made with concern only for the bottom line always come back to bite the companies making them right in the butt.

I don’t believe this really makes a difference for safety, because I personally have never seen anyone get hurt doing it this way,” was the excuse my own doctor used for prescribing Cipro to me for a sinus infection. She had personally never seen anyone have a reaction to Cipro. Well, that is anecdotal evidence and it’s weak. The medical community cannot on one hand say that mountains of anecdotal evidence that fluoroquinolones are harming people is not strong enough evidence and then use anecdotal evidence themselves for their continued widespread use. The changes the FDA recommended for the use of fluoroquinolones in 2016 were made for a reason. A panel of experts heard the testimony of those harmed and looked at medical research regarding fluoroqouinolones and made an informed decision. Making a decision based only on your own experience and observations is not an informed decision.

I say that change will happen in the medical field because in the pyrotechnic industry change is happening. When a change is recommended in how something is done it is probably because somebody got killed doing it the old way. People who want to be safe believe those recommendations even if they personally never witnessed an accident. The same will happen with doctors. Even if they never personally had a patient get floxed, they will follow FDA prescribing guidelines for FQ’s because they do not want to harm other human beings.

One thing that does stand in the way of this change is cognitive dissonance created by the very fact that no sane and rational person wants to harm another human being. As the evidence comes out that fluoroquinolones are insanely dangerous and that the side effects are horrific, long lasting and sometimes permanent, doctors do not want to believe that they put anyone through that. The fact that reactions are delayed means they most certainly could have severely harmed a patient and never known about it because the connection to the antibiotic was never made. It is going to be very hard for doctors to come to terms with this, and I think it is behind a lot of their strident claims that Cipro is “safe and effective.” They need it to be, because if it were not, then there is a good chance they have harmed those they meant to help.

A floxed friend recently shared her experience with an ER doc who tried to give her Cipro for a UTI without even culturing to confirm an infection. She gave him an earful and the expression on his face said that she got through to him. He was horrified. He will either now disbelieve her because he must to avoid a truth he cannot face (that he may have harmed patients) or he will do some research, find the truth, change his prescribing habits and speak to his colleagues. I believe that in time even this cognitive dissonance will be overcome and doctors will do what is right, follow the recommendations of the FDA, and stop prescribing fluoroquinolones in situations that do not warrant their use.

The fluoroquinolone catastrophe has gone on far too long. It can be discouraging to reflect on how many have been needlessly harmed. However, as I have observed changes happening in the pyrotechnic industry that, although sometimes opposed, do happen and do increase public safety, I have to believe that the medical industry is not immune to those same types of changes. I think if it were easier to sue for harm done by pharmaceuticals, that would actually be a good thing, because sadly, there are some people out there who are neither sane nor rational, but consumed with greed. Only one thing gets their attention, and that is losing money. There has to be more accountability for drug companies and doctors who prescribe dangerous drugs needlessly. I do believe it will happen and in the meantime, as we inform people about the dangers of fluoroquinolones we are playing our part in bringing about these much needed changes to the medical industry.

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7 thoughts on “Change Will Come

  1. Hélène Gómez August 6, 2018 at 7:15 am Reply

    Is tylenol ok to take after taking cipro? Its the ibuprofen and other nsaids we cant have now, correct?TY

  2. Victoria Foster August 6, 2018 at 8:16 am Reply

    Last Monday, I received a ‘floxie’ text that Johnson & Johnson and its subsidiary responsible for Levaquin fluoroquinolones was pulling this drug immediately! Did my eyes and ears deceive me?

    • Lisa August 6, 2018 at 8:18 am Reply

      Yes, J&J/Janssen have stopped producing Levaquin. HOWEVER, there is still a lot of generic levofloxacin on the market that is made by other drug manufacturers.

    • sarah August 6, 2018 at 5:22 pm Reply

      Yes J&J are stopping production, but their “brand” product Levaquin, will still be in pharmacies through 2020. There is still now word on the generic manufacturers

    • Ruth Young August 7, 2018 at 4:05 am Reply

      Tylenol is ok because it is not an NSAID but it can be hard on your liver and be very careful to avoid taking too much.

  3. Mary August 9, 2018 at 6:45 am Reply

    What bothers me is I don’t have the will to read your letter, I’m living in a fog.

    • Ruth Young August 9, 2018 at 7:27 am Reply

      I wasn’t able to read a book for pleasure for over a year after I got floxed. I read two yesterday. It gets better.

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