Thank you to world-class Duke oncologist Dr. Neil Spector
for letting share her brilliant and compelling letter to MA
Governor Baker who has hugely failed the suffering Lyme patients of his
state. Please make public and share this widely.
"Governor Baker,
It is with great concern for the welfare of the residents of the Commonwealth that I urge you to support Bill H4491.
I have been an academic medical oncologist and cancer researcher who
led the development of two molecularly targeted cancer drugs. I have
published basic and clinical research in the top tier, peer reviewed
journals. My cancer research and clinical oncology career was launched
at the MGH and Dana-Farber Cancer Institute. I am also a survivor of a
devastating case of Lyme disease that was misdiagnosed for several
years.
I have been in clinical and basic for 25 years. As a
scientist, I understand there are relative absolutes when it comes to
human biology. The real world experience changes medical practice. When I
was a resident in training, the dogma was that peptide ulcer disease
was caused by stress and increased acid production. The notion it could
be caused by a bacterial infection was considered by mainstream medicine
as being ludicrous and representing quackery. Scientists who proposed
that a bacteria, h. pylori, was an underlying cause of peptic ulcer
disease were laughed at. Well, two scientists who were laughed at by the
medical community ended up winning the Nobel Prize in Medicine for
demonstrating that h. pylori caused peptic ulcer disease. That "wacky"
idea changed the practice of medicine in terms of how we treat peptic
ulcer disease. There are many other examples of how dogma in our medical
system thwarted and delayed seminal discoveries that changed medical
practice.
People in your state and around the country are
suffering, falling through the cracks of our medical system. These folks
have Lyme disease and the co-infections that accompany Lyme disease.
Similar to the days before the acceptance of h. pylori as a cause of
peptic ulcer, there is a dogmatic approach that says that chronic
problems from Lyme or co-infections that persist beyond the IDSA
algorithm of care does not represent persistent infection. However,
based on excellent research from prestigious institutions such as Johns
Hopkins Medical Center, hardly a bastion of quackery, we know Borrelia
burgdorferi, the bacteria that causes Lyme disease, becomes resistant to
the standard antibiotics prescribed according to Infectious Disease
Society of America (IDSA) guidelines. We know there is persistent
infection in primate studies based on peer reviewed research from
scientists at Tulane and other institutions. Some may 'poo poo'
preclinical research. The reality is, we as scientists rely on research
in the laboratory to model human diseases. We would not have made the
transformative strides in Cancer if we had turned our backs on
preclinical research.
Studies suggesting that prolonged
antibiotic therapy is not effective, the basis for the dogmatic approach
denying access to additional antibiotics to patients who are physically
suffering, are grossly flawed in their methodologies.
The truth
is, we have failed our fellow human beings who are suffering by
accepting a dogmatic approach that is not founded on solid science. In
2016, where cancer patients are afforded cutting edge genomic science to
guide diagnosis and treatment, Lyme disease diagnostics are still
rooted in less than cutting edge and low sensitivity indirect immune
response diagnostics (ELISA and Western blot, the latter I have
performed hundreds to thousands in my own research so I'm very familiar
with the strengths and weaknesses of the assay). This doesn't take into
account the fact there are different variants of Borrelia that might not
be detected by current diagnostics.
I am not a Lyme disease
physician. I had to learn more than I ever cared to know about this
disease(s) due to my own misdiagnosed case that necessitated a heart
transplant and nearly cost me my life.
As a physician-
scientist, there are more unanswered than answered questions. For
example, does everyone with chronic symptoms after antibiotic therapy
for Lyme disease have active, persistent infection or some other
pathology triggered by the infection? We currently DON'T have the tools
to make that determination. There are numerous examples of infectious
diseases that require prolonged antibiotics and cocktails of
antibiotics.
I fully understand the dangers of unnecessary
antibiotic therapy on the development of resistant organisms and on the
all important protective normal gut microbiome. Having said that, there
are folks whose lives were ruined by Lyme disease until they found
compassionate and licensed physicians, many trained in infectious
diseases and rheumatology but not members of IDSA who treat these folks
with cocktails of antibiotics. Many of the people have their lives
restored. Does that prove they have persistent infection as credible
peer reviewed published research supports? I'll let you decide.
I've met so-called LLMDs [Lyme Literate MDs] who have more practical
experience with Lyme disease and co-infections than IDSA counterparts.
These LLMDs are thoughtful, read the latest literature, and as best they
can, try to improve the lives of people in need.
We don't
restrict treatment of diabetes MRI endocrinology, or treatment of asthma
to pulmonary specialists. Why deny people suffering with Lyme disease
access to care from highly experienced clinicians?
If you want to
focus your attention on the many unanswered questions surrounding Lyme
disease and co-infections, I would suggest you look to the State of
Texas for innovation. Texas established a $3 billion fund called CPRIT
(Cancer Prevention and Research Institute of Texas). CPRIT funds
researchers in the state of Texas, in a peer reviewed process, to
conduct transformative research. I consider the Commonwealth of
Massachusetts to be a highly progressive state when it comes to
innovative biomedical research and healthcare delivery. Massachusetts is
at the epicenter of Lyme disease. What an innovative move for the state
government to establish a research fund, which is sadly lacking at the
federal level, to help its citizens and ultimately those around the
country by funding research at Mass institutions to develop better
diagnostics and therapeutics and greater insight into this disease that
for many is not so easy to diagnose and cure.
Thank you for your time and consideration.
Neil Spector, MD
Sandra Coates Associate Professor Medicine
Duke University Medical Center
Durham, NC 27705"