Storify: White House Champions of Change for Precision Medicine July 8, 2015

Click here for highlights, comments, questions and tweets from White House Champions of Change for Precision Medicine July 8, 2015. Also attended Pre-Meeting on Regulations with FDA. 

Key points: 
Reboot FDA device regulations for patient safety 
Recognize genetic variation in tolerance vs. toxicity
Patient labels, Informed consent, Precision Devices 
Pretest "right for you" before they are installed
Include in medical (not just dental) record
Add dental section to MedWatch Report Forms 
Integrate dental into healthcare, insurance, records

NIH Precision Medicine Patient Engagement & Health Equity Work Group, July 1-2, 2015

Storify: NIH Precision Medicine Advisory Committee Work Group on Patient Engagement & Health Equity July 1-2, 2015

Click here for highlights from the Meeting, comments, questions and tweets.

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Laura H Russell @LauraHRussell

Excited to be at NHI #PMINetwork Meeting on Participant Engagement and Health Equity and meet all working for health

11:01 AM - 1 Jul 2015

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LET'S GET HEALTHIER AGAIN! 1 MINUTE VIDEO

Laura Henze Russell on Health, Chronic Disease & Hidden River Health Challenge, a project of Ocean River Institute

WELCOME! HIDDEN RIVER'S PATHS TO GOOD HEALTH, MAKING CHRONIC DISEASES HISTORY

What We Do To Help Others:

• engage people of all ages, stages, walks of life

• learn about genes and toxins, common causes of chronic diseases 

• understand our own health information

• share what we learn with others

• take actions to help ourselves and others

• reach out to health care stakeholders, patient advocacy and other device illness groups, and innovators in patient care, health apps, precision medicine, biotech, digital health, big data

What We Do to Help Ourselves:

• work with functional/integrative/environmental MDs, biologic/holistic/mercury-safe dentists

• get appropriate, helpful tests (biocompatibility, allergy, genetics, heavy metals, toxins)

• separate ourselves from exposures - in our bodies, homes, schools, workplaces, yards 

• get supportive treatment from knowledgeable professionals, monitor & curate our health

• build supportive communities so we share, give and receive support and help

• ask questions, advocate, communicate, innovate, thrive!

We Get Healthy, and We Change Policy Together

OLD HARD AND NEW FAST WAYS OF LEARNING ABOUT THE GENOME, THE TOXOME, AND HOME

I learned the old hard way (20+ years of chronic disease), then the new fast way about gene types and toxins: two years discovering biocompatibility issues in dentistry and medical devices, and immersion in the sciences and arts of investigative and scientific research. An economist and ethicist by training, with a new vocation and skill set by life's necessities and the fundamental urge to be well.

What am I learning? Health and chronic disease has a lot to do with methylation, and other basic biochemical and bioelectrical pathways essential for human life, animal life, probably plant life. We are the biome, the toxome, the home. Much as we like to think we are a higher being or species, our higher creative and economic capabilities come back to bite us when we ignore the fundamental economic, social, medical, environmental externalities at the scale of patient, profession, and  local, national and global levels.

It's all about luck in the gene pool, and in the toxins pool.Those with great genes can swill toxins and expel them with ease, and dance and compose magna opi in their 90s. Those with bad luck in methylation, detoxification, and immunological pathways can still be healthy - but only if they avoid toxins like the plague. Because they are ubiquitous, and stick with us given our genetic glitches, we begin the long slow decline, the long sunset, and the long goodbyes much too early, before our time.

But there is hope! We can now learn our gene types and our toxins, separate the bad from the bad, and strengthen the good.The body, brain and psyche has an astonishing capacity to heal itself when, like a computer or a car, we clean out bugs, reboot/reset electrical pathways and get things humming in the right direction again.

After being 25 years clinically older, I am now 25 years clinically younger. At 60, I may live to 101 like my grandmother relatively intact, instead of mid 80s with a horrible last few years like my mom. When my time comes I'd vote for a massive heart attack in my sleep or the ice floe or ocean to reenter the great sea and circle of life from which it began.

There are clinical trials underway in Sweden of a compound that boosts glutathione to help with metals toxicity because the FDA wouldn't grant orphan drug status. People travel even overseas for biologic dentistry because dental plans have no patient protection nor medical necessity rules, they are strictly commercial contracts that write their own rules. Health insurers would be so wise to cover biologic dentistry like any specialty, make referrals, and incorporate all things dental into EHRs.

Dental is the root of much inflammation and oxidative stress throughout the body and brain. Teeth are god's plan for mortality. Dental infections, and toxins - conveniently denied by the ADA and the FDA - cheat us of years of health, vitality, cognition and mobility. Dental mercury poisoning is acknowledged in many advanced countries, not in the USA. Toxins - bad for humans - are synergistic.

Biologic dentistry, functional medicine, integrative and holistic approaches are growing by leaps and bounds not just because they make people feel better, but because they work.

I am interested in partners for fascinating ventures. New interests include health innovation, apps and IT, wellness, chronic diseases, etiology, epidemiology, QR codes, old and new medicine, genomics, toxicology, pharmacology, cellular bio-chem-electrics, medical devices, FDA, Form 3500s, govt regulation of dentistry and medicine, self regulation of the professions, patents held by professional associations, conflicts between professional and commercial roles, civil rights, genetic rights (none where it counts in dentistry and not enough in medicine), constitutional law, health law, conflicts of interest among top regulators and industry, lobbying and campaign spending reports, media, censorship and journalism. 

RACHEL LOUISE CARSON: Google lets fly a Doodle true to ‘Silent Spring’ writer’s nature - May 27, 2014

My Comment on Today's 
Washington Post Article on Rachel Carson's Google Doodle: 

We have many scourges we have unleashed upon ourselves. We need to pick up the mantle and continue fighting not just the silent spring from pesticides, but the rising tide of chronic cognitive, immune, neurological and psychiatric diseases caused by the hidden river of toxins within us. 

The greatest scourges of our time, stealthily ravaging our bodies and minds, are mercury, mold and Lyme. They are not significantly recognized, they are not sufficiently considered and screened and tested for, and when found, they are not properly treated by the vast majority of physicians. 

Please read and share the Issue Paper: For Good Health, Integrated Care, and Making Chronic Diseases History, posted on www.hiddenriverhealthchallenge.blogspot.com. It addresses the first scourge.  

Rachel Carson was, and is my inspiration, and my muse. I organized a 1970 Earth Day cleanup in my high school, founded a local environmental organization, set up a school-based recycling center, and collected pictures for the first Dirty Dozen Campaign while a college intern at Environmental Action. 

Now we need to organize a People Day. Hidden River Health Challenge is gearing up to launch a Fishing Expedition to land the worst offenders, and celebrate the champions, of ending the scourge of dental mercury installed without our knowledge or informed written consent. Think about that. No labels No informed written consent. For a medical device. Containing a known neurotoxin. That off-gases mercury vapor with heat and abrasion, in teeth made to chew. Genetically susceptible children and adults experience great harm. It is not on our radar screen. 

The media is silent. The FDA was sued March 5th by the International Academy of Oral Medicine and Toxicology and others, and no mainstream media covered the release. Congress is silent. The Obama Administration is silent. Apparently the media and politicians are even more sensitive to toxins - the ones called money, lobbying, and spin.

Why Dental Tourism is Booming - Journalist Resource

There are several major reasons for the growth of dental tourism within and outside the U.S.

1) We do not have integrated health and dental insurance in the U.S.  Dental insurance is strictly a business contract that has no provisions for medical necessity or patient protection.  When patients need to do thing outside the scope of the contract, even when medically necessary, it is expensive, and there is no coverage.

2) The costs of dental materials in the U.S. are much higher than the cost of those same materials overseas.  Talk with people from other countries, and you may learn they get their dental work done when visiting home, saving thousands of dollars.

3) The U.S. lags much of the advanced and some of the developing world in recognizing the health impacts and risks of dental amalgam, which off-gases mercury, for genetically susceptible children and adults.  The FDA ruled in 2009 it is only Class II with Special Controls, requiring warnings from manufacturers to dentists, but not from dentists to patients. There are no consumer labels, no patient information, and no written informed consent for installation of a medical device that contains a neurotoxin. Five advanced nations ban amalgam use, and many including Canada and much of Europe now require health warnings and informed written consent.

4) This gives dental amalgam protected status as "standard of care" even if you are in a high risk group.  This is why dental insurers can ignore, and deny, appeals based on medical necessity despite doctors letters and proof of harm such as elevated mercury levels and chronic diseases and symptoms consistent with mercury poisoning. 

5) Depending on the number of molars and bicuspids involved, patients are forced to pay five figures and cannot access the premiums they paid for decades for the additional cost of alternative filling materials, so they go overseas. It can cost as much as one or two cars, and often hits at or after the time of retirement, making it an extra unexpected whammy.

6) The ADA fights tooth and nail to defend amalgam use at all costs, and the FDA is happy to oblige.  Former Commissioner Hamburg held stock options from Henry Schein as FDA Commissioner and sat on their board for six years before taking office.  She only recused herself from the flawed 2009 ruling within the last few weeks, and Schein wrote that it was deeply indebted to her work on the FDA ruling.

7) There are three U.S.-based dental associations that train dentists in biologic, biocompatible dentistry, and attract dentists internationally: the International Academy of Oral Medicine and Toxicology, the International Association of Biological Dentistry and Medicine, and the Holistic Dental Association.

8) There is also a considerable amount of dental tourism within the United States.  People drive good distances, even out of state, to find knowledgeable, expertly trained biologic dentists.  There are nearly 760 IAOMT members, about 640 in the US, 50 in Canada, and 70 from other nations. IABDM has about 210 members, and Holistic Dental Association 260. There is some overlap; so there are 1,000 biologic dentists in the U.S. or 20 per state, on average, 50 in Canada and 70 in other nations. In the nations that have banned amalgam there is less need to join such associations; Denmark, Finland, Norway, Sweden and Japan.

9) Journalists need to take a fresh look.  Resources such as the Shorenstein Center’s Journalist Resource admit that their algorithms are inadequate to give accurate, current guidance on medical topics, but they do not post a disclaimer.  The APHA rescinded its support in 2013 for an interim policy statement that declared dental amalgam a safe and effective restorative material.  I ask other journalists why they do not cover the issue and I am told that there is a long history of controversy.  There is controversy for a reason.  The job of independent media and journalists is to dive deeply into these kinds of issues, not avoid or sidestep them.

10) The IAOMT is the lead plaintiff in a lawsuit filed March 5^th against the FDA and HHS for failure to respond to a petition for reconsideration of its flawed 2009 Class II rule, which detailed numerous errors in the FDA’s risk assessment, and ignored the recommendations of its Scientific Advisory Panel.  The APA requires a response within one year, it has been 54 months.  The FDA’s response has been to archive all of the materials related to its 2010 Hearing on the Petition for Reconsideration and Regional Public Hearings, which had strong testimony on this, so they are hard to locate through a search.  I have the links for interested reporters.

If you want sources for in-depth reporting on this issue, additionally google and contact me.  I am working on a major piece on this and am happy to share as this topic needs the broadest national, regional and local coverage.  I'd also recommend the IAOMT website and searchable library, and the DrBicuspid website, for which it is free to register, the DAMS International Facebook page, and the website of the 2015 Documentary, You Put What In My Mouth?  Learn about the inside debates within in the industry, and listen to injured and recovered patients and dental staff, including biologic dentists themselves, not just what the ADA and FDA want you to hear.  

Where to Find a Biologic Dentist:
International Academy of Oral Medicine and Toxicology, Find a Dentist US 637, Canada 51, International 71. International Association of Biologic Dentistry and Medicine, Find a Dentist  US 212, International 1. Holistic Dental Association, Find a Dentist US 259.

Add More Protection to the Protect Bill! - March 12, 2014

My Comment on Venture Beat's blog, March 12, 2014: We Need to Return to Delivering Health Information, Anne Wojcicki

"The Protect Bill also needs... respect for biocompatibility and impact of toxins like mercury off-gassing from dental amalgam.  

Dental amalgam is scientifically and clinically proven to harm genetically susceptible children and adults who have gene types that do not clear mercury well. At least a half dozen gene glitches have been identified impair methylation (important to nerves) and detoxification (important to toxins) pathways. 

There are impacts for many of us as we age with these glitches, as our protective hormones and immune systems weaken.  The largest of these affects 20%+ of the population, 63M people.  In addition, 67M people have enough amalgams to exceed the FDA's "safe" reference dose, which doesn't take into account gene type. 

There are impacts for boys with CPOX4 from amalgam immediately - changes in kidney markers and neurobehavioral deficits.  James S. Woods, lead researcher of the initial CAT study of dental amalgam in children, retracted his findings of amalgam safety from the Children's Amalgam Trial in Portugal twice, in 2012 and 2013. Google to find the articles which the media ignored.

Animal studies show immediate distribution of mercury from installation of dental amalgam to the brains, kidneys and livers of sheep and monkeys.

The Net, Google, social media, courageous doctors, biologic dentists, scientists, Health IT, new tests, engaged people and parents and patients, and 23andMe helped save my health, my life, my family, my finances and my future after 20 years of chronic disease, and a year of serious, escalating health problems.

The FDA protects dated, dangerous products and industries over people and health. Protectionism is bad in the economy.  It is even worse in health, where the consequences are deadly, and incredibly costly to families, employers, health plans, and governments.   

The IAOMT sued the FDA March 5th for not responding to a petition for reconsideration of its flawed 2009 Class II ruling for amalgam after 54 months.  The Administration has not yet agreed to a request for a Surgeon General Report on Dental Amalgam and Mercury Health Risks.  Congress has not yet shown interest or leadership on this issue since its shining lights retired.

23andMe'ers, this is our time. Promote use and understanding of genetic information, and end genetic discrimination in medical and dental care.  Many of us require labels and protection from synergistic toxins like dental mercury which are ubiquitous and federally sanctioned, not labeled nor disclosed to us as patients or parents, and for which we do not get the basic human and medical right of written informed consent."

Testimony to MA Executive Office of Health and Human Services - December 10, 2012

Laura Henze Russell, Principal, 

Hidden River Health Challenge

December 10, 2012

I am Laura Henze Russell, founder of Hidden River Health Challenge, a mercury poisoned survivor working to improve our health and reduce chronic diseases by promoting mercury free dentistry and supportive health care. We work for health education, better dental insurance plans, and rebooting health and dental systems through education, advocacy, and moving people and markets.  We are reaching out to develop a collaborative agenda for change and to organize innovative research challenges and demonstrations to reduce health disparities.

For 20 years I had chronic pain, fatigue, sleep, memory and balance problems that were diagnosed as fibromyalgia. Between March 2011 and March 2012, I had a year of acute escalating health problems that a dozen specialists could not diagnose. I gave up hope. Then, by the grace of God, one of my doctors heard a presentation at a conference that symptoms like mine could be caused by a toxicity reaction to dental materials. Small amounts of mercury vapor escape from fillings with heat and abrasion. People with certain gene types do not clear mercury well, so develop health problems over time. I was able to get treated and get healthy again by removing the amalgam and following a detoxification protocol.

There are two new breaking studies released in September and October 2012:

1.   James Woods and team at U of Washington retracted earlier findings of amalgam safety in children and found that boys of a certain gene type have significant neurobehavioral deficits and kidney damage.

2.  Thomas Duplinsky of Yale Medical School found that dentists compared to matched controls have significantly higher prescription use in neurological, psychiatric, cardiovascular and respiratory disease.

This is new information and I would like to help other people in Massachusetts who have chronic illnesses, health problems, premature aging, memory deficits, mood swings or other health problems due to the hidden river of mercury in our bodies learn about this risk and regain health.

I have been working as a volunteer for 9 months to research mercury dental amalgam toxicity in the U.S.  I attended the International Academy of Oral Medicine and Toxicology Conference in MN, the U.S. CDC Health Statistics Conference in DC, and a symposium in CT, and am in contact with biologic dentists, scientific researchers, injured patients and advocates across the U.S. 

I am working with legislators and committee chairs at the State House to develop bills and budget items for the upcoming session, and have begun discussions with national funders on demonstration projects, and ask DPH and EOHHS to be a leader and partner in these efforts.

Action Agenda on Mercury Amalgam Illness

1.      Determine the Scope of the Problem of Dental Mercury Poisoning and Public Awareness

•       Hold public hearings around the state to get input from injured patients and their family members, and health and dental professionals.
•       Set up a patient registry and reporting mechanism at the Betsy Lehman Center and DPH Center for Health Information and Analysis.
•       Call for FDA Adverse Events Form 3500 Reporting to be mandatory by dentists and doctors for adverse reactions to dental materials and oral medical devices.
•       Develop pamphlets for patients, doctors, dentists, nurses and other health professionals, and targeting high risk groups which include older adults, military and veterans, Native Americans, and low-income people. Why the military? High usage, and greater at risk of heat and abrasion. For example, soldiers face greater risk of mercury off gassing through abrasion of teeth from traveling on dirt roads and combat related injuries, as well as desert heat.
•       Utilize the MA Prevention and Wellness Trust to investigate and educate to mitigate health disparities from amalgam toxicity, with a special focus on higher risk populations who have a higher incidence and cumulative body burden of mercury amalgam.

2.      Specific Informed Consent and Health Warnings

• Reform MA Dental Code sections 515 and 517 to provide for specific informed consent for dental fillings, and reporting for morbidity, not just mortality, for dental procedures.
• Include warnings to patients similar that dentists get from manufacturers under FDA’s Class II Special Controls Guidance Document for Mercury and Dental Amalgam.
• Develop an informational brochure for patients as Connecticut did by executive action.
• Include information on materials and potential side effects, similar to prescription drugs.
• Include recommendations for patch testing, as required by FDA for hair color products.
• Include recommendations for biocompatibility blood tests for dental materials.

3.      Dental Insurance Reform

• Require dental plans be cost-neutral for alternatives to amalgam outside of the "smile area".
• Require dental plans to cover remediation when medically necessary.
• Flexible spending account for dental work as a pre-tax alternative to dental insurance.

4.      Structural Solutions

       A Blue Ribbon Commission can sink its teeth into these issues and consider how health care and dental insurance systems and medical and dental records can be better integrated to promote health and reduce chronic diseases.

·     Examine ways to update screening standards, such as periodic heavy metals and toxics screens, covering provoked urine testing to determine body burden, screenings before pregnancy and behavioral health referrals, and for concussion patients and returning soldiers.

·     Promote biologic dentistry, which integrates dentistry and health based on evidence-based research, similar to ways to promote clean and green energy and energy conservation industries.

·     End the FDA logjam on dental amalgam by calling on the President and Congress to direct FDA to follow the recommendations of its Scientific Advisory Panels in 2006 and 2010 to restrict its use in young children, pregnant women, and people with a known “allergy” to mercury.

We can save money and bend the cost curve down by stopping poisoning people who lose the gene lottery, and pay a heavy price as they age. This will have spinoff effects that can also help reduce costs of long term care, unemployment, lost tax revenues, and special education. Thank you.

From Silent Spring to Hidden River: Guest Post on Independent Minds Blog - May 21, 2012

2012 MAY 21

by Rick Holmes
A guest post by Laura Henze Russell:

Fifty years ago, Rachel Carson ignited the environmental movement by

publishing, Silent Spring. Highlighting the impact of pesticides in

damaging birds’ reproductive cycles, Silent Spring sounded a trumpeter

swan’s call to remove species-killing substances from the environment.

Earth Day was organized in communities across the nation, the EPA

created, and the Clean Air, Clean Water and Toxic Substance Control Act

passed.

Fast forward fifty years. Countless new chemicals and  bioengineered

substances have been developed. Laws have not kept pace with rapidly

advancing technology that has gone beyond our wildest imaginations. New

processes like fracking for natural gas are harming the air, water

supply and food chain in new ways. Old poisons like mercury persist in

being put permanently into people’s mouths, and get a free pass by being

labelled a ‘medical device’ in silver-colored amalgam fillings. Flame

retardants are showing up in alarming levels in young children’s blood

samples.

Our immune systems and neurological systems are under constant assault.

When they give way, we become increasingly sensitive, and increasingly

sick. Babies, children, adults, boomers and older adults are all at risk

across the age spectrum, these are equal opportunity toxins.

It is time to shine a bright, penetrating light on the Hidden River of

chemicals, biologicals, bioengineered nanosubstances and toxic metals

and elements running through us. Pass the Safe Chemicals Act, ban dental

mercury amalgam use, and get up to speed on bioengineering risks before

we bet and buy the farm. Not only will we bankrupt the health care

system, we will have a very silent planet.

Laura Henze Russell is part of the MA delegation, Alliance for a Healthy

Tomorrow, attending the Safer Chemicals Healthy Families Rally in

Washington DC on May 22nd.

From Ocean Lifeguard to Health Lifeguard

Hidden River Health Challenge: A Social Innovation Enterprise

April 23, 2012

From Ocean Lifeguard to Health Lifeguard

I was an ocean lifeguard and have the lifeguard's mission to protect everyone in and out of the water. 

If there is a rip tide, I'd swim out and help guide people in safely to minimize risk. I'd help them understand what to do next time to stay safe. I'd give anyone who needed it first aid. I also loved to teach Red Cross swimming lessons - how to enjoy the ocean, bay and lake while enjoying nature, exercise, and breaking waves' ozone and endorphins. 

After being chronically ill, and finally figuring it out, and working to regain and restore my health and vitality, I have a new calling: as a sort of Health Lifeguard.

Hallelujah, I am Healthy Again!

After 20 years of chronic disease and a year of escalating health problems, I'm healthy again! 

The keys to understanding chronic diseases are unfortunate combinations of gene types and toxins, which trigger inflammation.

Inflammation, causes a raft of awful, no good, very bad, cognitive, immune, neurological and psychiatric diseases, as well as damage to cells, nerves, organs, senses and skin.  

I am healthier! I lost years of health, lost years of income, and still have years of higher dental and medical costs.  

I don't want others to have to go through what I went through, physically or financially.

Join us at Hidden River, to help ourselves and others too.