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My Thoughts On The Last Few Weeks

By Author Andrew Speaker, Esq.

I am incredibly relieved that the testing that has come out shows that I don?t have Extremely Drug Resistant tuberculosis. It has been an incredibly long and difficult month, but this has been a relief for both myself and my family. For the international panic that was created after my misdiagnosis and the way my case was handled, I can only hope that this news helps calm the fears of those people that were on the flights with me. I hope that out of all of this will come a greater understanding of the current threat that TB poses and that on a global level we must start doing more.

The truth is that my condition is just the same as it was back in early May, long before there was a huge health scare, and back when I was carrying on my daily life and was told ?I was not a threat to anyone?. By May 1, 2007, CDC and Fulton County were all aware that I had MDR TB. By that time I had gone through extensive testing, and even surgery, in order to be sure that my condition could be diagnosed. I had discussed MDR TB with my doctor and with the county health officials, who were in close communication with the CDC.

I had been taking the standard TB medications and in early May I was told to stop taking them because it was resistant. On May 10, 2007, I was clearly told that I was, ?not a threat to anyone? and ?not contagious.? While people have questioned why this was recorded, its importance has been pivotal. As of the morning of the Senate hearing, I was told that both Fulton County and CDC were to come on Larry King Live later that night. At the hearing it was claimed that I was told that I was, ?not highly contagious? and that my drug susceptibility was not known until after I left. When it was clear that I could prove otherwise, both Fulton County and CDC declined to appear on Larry King Live.

The first time I am aware that the term, ?predominant strain?, implying there may be more than one, was ever used, was brought up by CDC on the July 3, 2007 conference, in my opinion to cloud the issue of whether they made a mistake. CDC claimed the difference between the results was because they used the ?agar proportion? method, which is the standard, and that National Jewish didn?t use this test. This is a complete factual error and they know that. What was the point in trying to make National Jewish?s tests less valid? The fact is that National Jewish used not only the ?agar? method, but to make sure they got accurate results, they also used two other methods, they understand the importance of getting consistent and accurate results.

I have recently come to learn that many hospitals believe that when you have MDR TB you should be isolated, for the public welfare, until it is determined that you are on a working treatment plan, and you are culture negative. None of the health officials from the county or CDC told me in May that this was necessary, and I can only imagine that they did not know the proper procedure. No one will claim that this was ever told to me. The point of this is not to make excuses, but to clarify incorrect information that is being reported. I am not a doctor, I do not claim to know what I should have been told, or how they should have handled things, I can only describe what truly happened.

At the News Conference CDC claimed that whether MDR or XDR, they needed to protect the public and ?err on the side of caution? and that once you have information you must take action. If this is the case, why, for two weeks after the health departments knew I had MDR TB did no one do anything, or communicate that my family, wife and daughter could be at risk? The CDC stated that there was no public health difference in the way these two conditions should be treated, so why the huge difference in the way they treated the case when I was thought to be MDR versus XDR. I don?t have any issue with being put in isolation if that is what is necessary to protect the public health. My main issue is that they knew I had MDR before, and yet they stated isolation was not necessary. That is a huge difference, and a standard procedure needs to be created and followed.

Why is CDC hiding the fact that they did DNA sequencing on my specimen before I left for Europe and before my meeting with health department officials on May 10, 2007? Why are they hiding the fact that based on the genetic markers, this test showed that I had MDR TB and not XDR TB? Why have they not included anything about this test, and the clear contradiction, in their own official timeline and have not mentioned it in any of their communications? Why did they not convey to me that this diagnosis posed a threat to my family? My own medical records clearly show that the CDC told my doctors that I had MDR TB on May 9, 2007, the day before I was told that there was no need to be sequestered and I was not a threat to anyone. Why do they claim they didn?t know I was leaving the country, when they were told my itinerary back in April? Why, while at Grady in Atlanta, did CDC claim to the public that I had to be isolated and was a deadly threat to everyone, when their plan was to have my wife and I drive ourselves cross country to Denver, staying at hotels along the way? This didn?t change until Kaiser Permanente agreed to pay for a flight, the very day we were planning to leave.

It is true that at times the government must act to protect the public?s welfare and balance personal liberties with public safety. Two popular quotes are that, ?With great power comes great responsibility? and Edmund Burke, ?The greater the power, the more dangerous the abuse.? The ability to put a leash on someone?s personal liberty, when granted, must be used with great discretion. The public must have confidence in not only the agency?s competence, but that they are not acting out of a sense of self-interest or self-preservation. It is equally important that they be willing to admit mistakes and voluntarily improve the way they handle situations. I believe that most people understand that we all make mistakes and are able to forgive others for those mistakes. It is more important to fix the problem than create excuses. Without the faith that government will have the truth and the public?s best interest at heart, it is difficult for a ?covenant of trust? to exist between a patient and health officials. In the future I hope they realize the terribly chilling effect they can have when they come after someone and their family on a personal level. They can, in a few days, destroy an entire family?s reputation, ability to make a living and good name.

On a personal note, thankfully my treatment will now be based on less toxic drugs than my earlier misdiagnosis dictated. However, the most important thing that can come out of the last month has nothing to do with my treatment. The sad reality is that one third of the world has TB and it accounts for one quarter of the world?s preventable deaths. I hope that the attention TB has gotten lately results in more being done to help eradicate one of the world?s deadliest killers. This is not a disease that is bound by socio-economic status or geographic location and it must be addressed accordingly. While my road to treatment has gotten easier, I hope that this news doesn?t quiet the serious attention that I have come to discover this disease deserves. I truly appreciate all of the kind thoughts and prayers that have been expressed. By being transferred to National Jewish I was given something that every American should be entitled to, the best possible chance for treatment and recovery. The fact is that we can act now to combat and treat this global killer, or be forced to react later. I believe that God has a purpose in everything, and I pray that out of this will come greater awareness and action now, when making a difference is a choice and not a threat to our way of life.

Full post as published by The Speaker Law Firm Personal Injury Blog on July 06, 2007 (boomark / email).