From MetroWest Daily News July 14, 2015

• Russell: Congress can do more to fight ‘hidden health risks'

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   By Laura Henze Russell
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  Guest Columnist

  Posted Jul. 14, 2015 at 3:52 PM 
  
  
  

  The 21st Century Cures bill, passed the U.S. House of Representatives on July 10th, would provide $8.75 billion in funding over five years to the National Institutes of Health (NIH), and $550 million in additional funds for the Food and Drug Administration (FDA) to speed discovery and approval of drugs and devices. It needs a little tweaking by the Senate as it takes up its own biomedical innovation bill to accomplish the ultimate objective of curing the most Americans at the least possible cost. This can enable us to begin to pay down the national debt, and finance efforts on more complex health problems.

  We would do well to focus attention on the common causes of chronic diseases, and the hidden health epidemics that are endemic to our time. These include Lyme and various tick-borne coinfections, mold that is hidden and off the radar screen, and surprisingly, medical and dental devices that are not pre-tested for biocompatibility in individual patients to ensure the materials are “right for you.”

  An increasing number of medical and dental professionals, ill and recovering patients, medical researchers, and public health professionals now consider these hidden health risks as a major driver of chronic diseases that impact Americans across the age spectrum, as transmission of microorganisms, heavy metals and the like can occur through direct exposure, and prenatally and via breast feeding. Device illnesses for people with genetic susceptibilities include such common FDA approved products as artificial joints, cardiac devices, dental amalgam, Essure contraceptive coils, implants, mesh, and stents. I have personal experience with one of these products, and friends with all of them.

  With the progress of Precision Medicine in recent years, clinicians are discovering the varied causes behind a range of chronic disease diagnoses. These conditions are legion, and include ADHD, allergies, arthritis and Alzheimer’s; chronic fatigue, diabetes, fibromyalgia, and heart disease; gastrointestinal problems, fungal and yeast infections, skin irritation and rashes; Multiple Sclerosis, Parkinson’s, peripheral neuropathy and tremor; and behavioral, cognitive, memory, mobility, mood and mental status challenges. Surprisingly, good clinicians using the principles of functional medicine are able to properly diagnose and “reverse engineer” some of these diseases, when the specific genetic susceptibilities and toxic inflammatory triggers are revealed by genetic and toxic screening.

  It is time for the nation’s health system to catch up. With 21st Century Cures and other bills concerning FDA medical device regulations and taxes in Congress, we have a chance to reboot the system in several ways. There is broad bipartisan and public support from America’s families, who serve as patients, parents, caregivers, relatives and friends to people with a growing number of such health challenges, which tend to multiply as they mature and age.

  It is important to do 21st Century Cures and Device legislation right. Here are some Big Ideas.

   1) Focus attention on common causes of chronic diseases: bad combinations of gene types and toxins outside and within the body, including medical and dental devices. These diseases need remediation and reverse engineering, not lifelong medication. Prompt diagnosis and proper treatment can forestall a future of costly prescriptions for symptom control, joint replacement surgeries, mobility aids, memory care, etc.
  

  • 2) Rebalance federal health priorities, research, surveillance and spending so it focuses on the biggest, most prevalent, easiest-to-resolve health burdens of chronic inflammatory autoimmune and neurological diseases impacting the body and brain. Focus on common, everyday health risks - especially for those with common genetic variants in their methylation and immune pathways - such as mercury, Lyme and co-infections, and mold. These are endemic, and the hidden epidemics of our time.

    3) Medical and Dental Device Safety Urgent Reform (MEDDSURGE) as regulations years out of date and UDIs alone do not go far enough. Patients must get labels, written informed consent for dental fillings, prior biocompatibility screening to determine if a device is "right for you" before installation, entry of all device information into EMRs (not just dental records) seen by one's doctor and big data, and a revised MedWatch Form 3500 with a new section specifically designed for dental device adverse reactions.

    4) Redirect Medical Device Tax to a Victims Medical and Dental Device Illness Compensation (MEDDIC) Fund. Many patients wind up with harm after the fact as we still prescribe devices based on averages rather than individual tolerance vs. toxicity pre-testing. Somebody has to pay for remediation, treatment, recovery, lost income, and high uncovered medical, dental and care expenses patients have incurred.

    While we are promoting 21st Century Cures, it would be wise to end 19th Century dentistry. Nobody is filing patents to perfect amalgam anymore - not even the ADA - only to mitigate its harm. And stop open season on women and men via reproductive system, heart, joint and other implants that are not well tolerated by those with methylation and immune variations. Test for tolerance or toxicity first.

    Call your Representative and thank them for their vote, and Senators Ed Markey and Elizabeth Warren at 202-224-2742 and 202-224-4543, respectively, and ask them to Rebalance Attention to Chronic Diseases and Medical Device Safety, Focus on the Common Causes and Hidden Health Risks for Chronic Diseases, and Reform FDA Regulations for Precision Devices and Safety via MEDDSURGE and the MEDDIC Fund.

    Restore, safeguard and protect the health of Americans for the health and well-being of us all.

    Laura Henze Russell is the Principal of Precision Research & Communications: Precision Health. She was an invitee at the White House Champions of Change Precision Medicine Event July 8th, and also attended the NIH Precision Medicine Advisory Committee Work Group on Patient Engagement and Health Equity July 1-2, 2015. Her summaries of these events are athttps://storify.com/LauraHRussell/nih-precision-medicine-patient-engagement-health-e andhttps://storify.com/LauraHRussell/white-house-champions-of-change-precision-medicine.

  
  

More Should Be Done to Fight Lyme Disease

From the Sharon Advocate

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  • Column: More should be done to fight Lyme disease

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    By Laura Henze Russell/
    Guest Columnist

  Posted May. 7, 2015 at 8:17 AM 

  SHARON
  

  Lyme disease is one of the biggest health scourges of our time. The numbers of patients affected keeps rising skyward with official CDC estimates now at 300,000, or 10 cases for every one officially reported.

  Patients and observers believe many more cases exist than are ever diagnosed, as the walking wounded and mysteriously ill wander among us.
  

  May Day is being organized as a national day of action for Lyme awareness and proper treatment, with advocates in Washington, DC until May 1 to lobby Congress and meet with the CDC to call for better diagnostic and treatment guidelines.

  Our public health system lags badly on all the biggest scourges impacting health. As with other governmental institutions, change is lumpy, episodic and slow. While that is unfortunate in other fields, in health where new threats emerge but their seriousness is not recognized and acted upon, it is dangerous.

  Our public health system is quick to act on exotic, foreign, rare threats, but not on the garden variety, everyday things in our yards, homes and bodies that are making us ill.

  Growing up on Long Island and living in eastern Massachusetts, Lyme is among the three challenges that took down my health and vitality for more than 20 years.

  For others and me with persistent Lyme - a short course of generic doxycycline hyclate and even a longer course, didn't fully work (it did make me nauseous).

  Perhaps Lyme spirochetes have developed resistance, or it only works on some strains and times of the life cycle, or people with different gene glitches need different Rx - all of these questions urgently need research. A short course of doxycycline monohydrate did work.

  Different treatments are needed for different stages of the disease. Why is this knowledge not spreading in the medical community and to the CDC, leaving patients to fight to update their guidelines?

  Regarding tests, it is important to remember this: "In order to cycle between two very different hosts, B. burgdorferi varies its gene expression, leading to different protein components and enabling physiological adaptation to these environments [49–53]. A number of studies have begun to delineate those changes." (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440571). Therefore, "gold standard" PCR tests with narrow interpretations regarding the bands may be correct in identifying a particular stage of a particular strain of Borrelia burgdorferi (Lyme spirochete), but miss related strains of the disease, miss other life cycle stages (e.g. spores), and also miss co-infections, for which too few doctors test.

  The CDC must keep up with new science, diagnostics and effective treatments in this era of precision medicine. The FDA has far to go in protecting people from all kinds of toxics which it lets slip through the regulatory approval process, especially for installed medical and dental devices for which people have varying genetic tolerance and toxicity levels.

  Informed observers - from physicians to researchers to patients - believe Lyme reached truly epidemic proportions. It is worth exploring whether prophylaxis is in order for those at greatest risk, just as one takes prophylactic Rx for malaria when traveling to parts of Africa, Asia, and Central and South America.  

  There is a renewed drive to crack down on anything that deviates from medical orthodoxy. True innovation and advancement comes from disruption, whether in medicine or other fields. These agencies need a reboot on materials safety, and to take a broader view of tests and treatments that are helping hard-to-diagnose but very ill patients recover and get back with their lives, back to their work and paying taxes, and fully back to their families. They need to put patients and health first.

  Laura Henze Russell is the principal of Precision Research, Writing and Communications in         Sharon.
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