Emergency Kit – be afraid, be very afraid

Dear all

This is National Preparedness month.  The Center for Disease Control (CDC) promotes October as a time when families should review their preparedness plans in the event of a disaster.  They publish a zombie survival guide which is a relatively light hearted way of thinking through what you need to survive if a disaster does strike.

The current Ebola virus has given the issue of emergency preparedness more visibility this month, and I noted in a blog a few weeks ago that we were going to update our own family emergency kit.

I am glad that we did as our kit was sorely, sorely out of date.  I put this kit together about eight years ago and many of the supplies and most of the food was out of date.  More embarrassingly I had obviously put the kit together in the summer expecting something akin to an extended summer camping trip – we had no real wet weather gear and nothing that would keep us warm in freezing conditions.

The clothes that we had stored for our then five year old daughter would have only been effective as rags – she has grown somewhat in the last eight years!!!

So we have gone through the kit, replaced the food, updated other emergency supplies, warm and wet weather gear.  We still need to store 65 gallons of water (the American Red Cross recommends 3 gallons per person per day), and we need to scrounge up things like spare eyeglasses, spare medications etc.

We ended up buying large 27 gallon storage totes from Lowes to store all of the stuff.  We now have seven of these containers packed to the gunnels with just the core items on the Red Cross and CDC recommended lists.  I thought that this would be a quick once over check off this gear and it has turned into a significant projects over three weekends.  We are also now left with the problem of where to keep all of the stuff.  It needs to be dry and safe and obviously accessible in the case of an emergency.

We are now better prepared, and we hope that we never ever have to depend on these kits.  Even at seven totes this is the bare minimum and it makes you realize how much we take our shelter, our warmth, our ability to cook and clean and stay safe for granted.



Ken Gordon

Executive Director

Emory University Hospital Commitment to Community

Good morning

There was an amazing story on NPR this morning about the preparation and commitment to infection control by the Emory Healthcare.  You can read and listen to the story here.  Their multi-year commitment to preparedness for infectious disease control, training of staff, preparation of facilities and of sharing their own best practices is amazing.

They have developed and keep updating an 84 page Ebola protocol.  For those who are interested this protocol can be downloaded here.

emory_customEbola patient Amber Vinson arrived by ambulance at Emory University Hospital on Oct. 15. Now healthy, Vinson was discharged from the hospital Tuesday (Kevin C. Cox/Getty Images).

Ken Gordon

Executive Director

What can your genes tell you? Ask the Portland Community Conversation

October 21, 2014

For the crowd that gathered at the Lucky Lab Pub, the Conversation came down to two things: 1) what is the balance between individual rights to information and Food and Drug Administration (FDA) device regulation with direct-to-consumer genetic testing like that provided by 23andMe? and 2) how will individuals interpret and act upon information they receive from direct-to-consumer genetic tests?

Summer Cox, from the Oregon Health Authority Genetics Program and Shaban Demirel, from Legacy Research Institute, facilitated this Conversation. Summer provided expert information and Shaban reflected on his personal experience using the 23andMe service before its range of health-related services were disallowed.

Some people felt an absolute right to be able to purchase a genetic testing service and receive information about their health risk for diseases, the way their body processes drugs like statins and caffeine and whether they have or ‘carry’ any inherited conditions. After all, “it’s not the FDA’s role to censor knowledge.” There was little debate in the room about the accuracy of genetic sequencing itself; rather people were concerned about the validity and reliability of the meaning of the genetic data provided by 23andMe. Some meaning for raw genetic data was based only on studies of 750 people, maybe not a large enough sample for statistical power; some diseases are not well-studied enough to have full knowledge of the genetic input. The more serious a condition, the higher the stakes for accuracy. Among those concerned, one laid bare the issue using a relatable gasoline analogy: “You want the government to protect you against the bad guys. If you pull into the gas station and buy a gallon of gas, you want it to be a gallon, and you want it to be gas!”—this is the same reason the FDA has ordered 23andMe to stop providing health-related genetic information to consumers—they want the genetic tests to do what they promise and do so accurately.

But then again…is genetic sequencing and interpretation really a device? Maybe the ‘book of regulations’ isn’t broad enough in scope to cover this kind of test.

Attendees were also mindful that once these test results land in your lap, how will you take the information? How will you respond? The company 23andMe is very aware of this concern and when they previously offered the health-related tests, they directed the consumer through a series of deeper and deeper consent to learn their genetic information on more and more serious conditions. As Shaban pointed out, “you cannot unlearn this information.” At one time, 23andMe offered predicted health risk for 122 diseases and 53 inherited conditions. That’s a lot of data to take in for oneself and/or ones children. “What if one of your results is really important? 122 traits? It’s overwhelming emotionally. It’s expensive to follow up on.” Attendees agreed that most people react emotionally first, before their rational brain kicks in to consider the information.

Along the same lines, attendees raised the concern that the meaning of predicted risk for a condition or disease will be read differently person to person. Most people lack a strong understanding of ‘risk.’ Some may be truly scared when they read of their three-fold increased risk for atrial fibrillation over the general population; some will read further and see this only elevates their risk from 1.7% to 5%, which is a small number—but others will be hung up on the three-fold higher risk and panic.

And yet, with all this, attendees acknowledged that there is uncertainty in all things like this—in the meaning of our genetic information and the meaning of health-related tests we take at the doctor’s office. “The public has an inflated sense that the answers our doctors give us are black and white. Maybe bringing to light the uncertainty is a good thing.”

We also shared some laughs. An attendee shared with the whole group that when he was diagnosed with glaucoma, he was in disbelief. He couldn’t process the reality of that diagnosis-given in his doctor’s office– and imagined that many people sitting with 23andMe data might feel the same way. He went so far as to say that he was proposing alternative diagnoses, “Maybe I just have a really big optic nerve!” And that is when another attendee urged from the other side of the room, “Own your phenotype!” The room erupted in laughter.

In the end, we weighed and applied the ethics principles of autonomy and beneficence, enjoyed our pints and chips, joked about hairy big toes—and Hobbits– and dry earwax, and got one another thinking. Some people sent away for 23andMe testing kits. Some wished they could still receive health-related genetic information from 23andMe. And the rest of us went away wondering if we really receive a gallon of gasoline when we pay for one.

Thanks Everyone! See you soon again in Portland…

Jen Wroblewski


Good afternoon coffee lovers

Coffee Mad Scientist

An article in today’s Seattle Times, cites research from one of NWABR’s members – the Fred Hutchinson Cancer Research Center – or as they are often known the “Fred Hutch”.

Apparently, the Hutch has proven a link between coffee intake and DNA. As a person who has some DNA floating around in my coffee circulatory system I definitely think that this must be the case. Coffee does not make me buzz, coffee does not keep me awake and I think my bladder would burst before my caffeine levels ever reached dangerously high levels.

Its good to know that my DNA has allowed the healthy consumption of such unhealthy quantities of this magic elixir.

Real cause to Thank Research.


Ken Gordon

Executive Director

Around the World With IDRI

Dear all
Around the World with IDRI

The Infectious Disease Research Institute (IDRI) is hosting an information evening on Thursday October the 16th about emerging diseases, such as Ebola and chikungunya and also age old diseases such as tuberculosis. As everyone now knows these diseases can so quickly span the globe. This discussion will focus on the rapidity of the spread and what we as individuals, families and communities can do to stop this.

This is a hot topic at the moment and I have shared news of this event with my friends and family because I think it is important that we know about this.

In the developed world there is a belief that because we have access to the most amazing medical facilities that such diseases are not so dangerous. Nothing could be further from the truth. A few thousand highly contagious individuals would have the ability to rapidly overwhelm our medical facilities. Even if we had this number of infectious control beds available – this number of incredibly sick people will mean that medical, nursing and other care professionals will be pulled away from their normal day to day work. I may not be a direct victim of Ebola – but if my heart condition cannot be treated – I could easily become an indirect victim of Ebola.

We therefore cannot rely on the traditional health services during such times. A major epidemic is similar to an earthquake in that the message has to be that individuals and families have to be able to look after themselves until such time as authorities can catch up. It is worth using this time when we are not in an epidemic to look at household preparedness.  At the end of this blog I have included a list of items from the American Red Cross that each family should have to help them survive the aftermath of a disaster.

When it comes to epidemics there are a number of other key precautions.  These include minimizing the spread of disease by staying home, and really watching hygiene when someone is sick.  Wash hands, watch for droplet infection, sanitize surfaces and items used by a person that is sick.  Seek medical attention, but call your medical facilities before arriving – some diseases such as measles can remain present floating in the air for several hours after a contagious person has been in a room.  Your medical facilities can help make arrangements to keep all their patients safe.

If, and I fervently hope this does not happen, a disease such as Ebola does take hold in the developed world – then the best defense is to not get the disease.  Everything that we can do to minimize cross infections will become increasingly important and having access to an emergency kit like the one listed below will be a vital part of helping people to stay safe.

This is the suggested items from the American Red Cross that each family should have prepared in case of a disaster:

Water—one gallon per person, per day (3-day supply for evacuation, 2-week supply for home)
Food—non-perishable, easy-to-prepare items (3-day supply for evacuation, 2-week supply for home)
Battery-powered or hand-crank radio (NOAA Weather Radio, if possible)
Extra batteries
First aid kit – Anatomy of a First Aid Kit
Medications (7-day supply) and medical items
Multi-purpose tool
Sanitation and personal hygiene items
Copies of personal documents (medication list and pertinent medical information, proof of address, deed/lease to home, passports, birth certificates, insurance policies)
Cell phone with chargers
Family and emergency contact information
Extra cash
Emergency blanket
Map(s) of the area
Medical supplies (hearing aids with extra batteries, glasses, contact lenses, syringes, etc)
Baby supplies (bottles, formula, baby food, diapers)
Games and activities for children
Pet supplies (collar, leash, ID, food, carrier, bowl)
Two-way radios
Extra set of car keys and house keys
Manual can opener
N95 or surgical masks
Rain gear
Work gloves
Tools/supplies for securing your home
Extra clothing, hat and sturdy shoes
Plastic sheeting
Duct tape
Household liquid bleach
Entertainment items
Blankets or sleeping bags

Just by the way – I do have one of these kits – but it is out of date.  This will be one of my own tasks this coming weekend ….



Ken Gordon

Executive Director


Reflections from A Community Conversation “For the Greater Good, Please Share Your Brain with Us” September 23rd

On a very wet Tuesday night, members of our community gathered to learn about and discuss a proposed emergency research study to improve survival and neurological function following traumatic brain injury (TBI). Dr. Eileen Bulger, Chief of Trauma at Harborview Medical Center, provided an overview of her team’s proposed research that relies on an Exception from Informed Consent to investigate the effectiveness of tranexamic acid (TXA) when administered in the field by first responders to patients with TBI. TXA is well studied in both animals and people, and has been used for other bleeding conditions since the 1960’s.

Warming their hands around lattes and mochas, Community Conversation attendees discussed the crux of this proposed study: how can researchers conduct the study to hopefully decrease mortality and increase brain function in TBI patients while respecting the autonomy of those who are enrolled?

One of the hallmarks of research involving human beings is the process of informed consent. The research community, and Dr. Bulger’s team, agrees that this process is critical to ensure that potential volunteers fully understand what their participation might mean and to understand their rights if they do volunteer. But the process of informed consent looks different, by necessity, when patients are unconscious and suffering from TBI. In this study, taking place at 9 other sites in the US and Canada, people who are eligible for the study, not wearing ‘opt out’ medical bracelets, and not accompanied by family members who can be immediately consulted, are automatically enrolled to either the control or study arms. As soon as is practical, patients and family members are informed and given the opportunity to continue participating in the study or not.

The focus of the discussion was partly on the need for advanced community notification, which is required for studies like these. Some thought it was impossible to alert enough of the community (and what constitutes ‘enough’) about the study since it enrolls patients for an unpredictable injury; others were pleased that the research team has worked hard to inform groups at high risk for TBI—cyclists and the elderly. To do: people need to talk to their family and friends about their wishes regarding research and medical treatment so they have a better chance of experiencing research and care according to their wishes.

At my small group table, we spent quite a bit of time wondering if the bar for research conducted under the Exception from Informed Consent was too high. Once he learned that the application process has been over one year, one person exclaimed there is a “greater risk of harm that research is delayed and new treatments are not implemented as soon as possible.” Dr. Bulger countered that there is no such thing as the bar being too high. She emphasized the importance of research standards being unassailable so that people can be assured that the studies are being done at the highest, most trustworthy level.

The discussion was attended by at least three people who had experienced TBI. One was reluctant to agree to the study and was considering an opt-out bracelet. After his concerns were heard by the study team, mainly around a misunderstanding of the inclusion criteria, he decided not to opt out. While attendees can understand the concerns about enrolling someone without their direct consent, many nodded vigorously when one person said, “it really comes down to relationships and trust.”  Read more about this event at UW NewsBeat!

If we, the public, are to have positive relationships and trust with our community researchers and health care teams, then we need proof of maximum personal care, maximum research standards, and maximum contact with those conducting research and our health care. I am hopeful that our readers and research teams have enjoyed this material and I challenge you to attend and/or speak up at a future Community Conversation or other public conversation.

With gratitude,

Jen Wroblewski
Public Engagement Manager

An Uphill Battle for Ground Breaking Research, By Troy Chapman

Advocates for health and biomedical discovery would do well to develop and adopt a compelling communication strategy of their own in the face of an uncertain funding climate for the National Institutes of Health (NIH). On August 12th, Senator Patty Murray and NIH Director Dr. Francis S. Collins convened a room full of inquisitive professionals concerned about NIH funding. The message delivered: ‘Funding for NIH faces an uphill battle.’ Senator Murray and Dr. Collins, along with President Michael Young of University of Washington (UW), delivered a compelling case for a sustainable approach to NIH funding that limits fluctuations, while enabling the biomedical revolution to take place in our state and nation.

To kick off the discussion, President Young discussed the benefits to our economy resulting from research and development at the UW. For example, Young cited eighteen different spin off companies utilizing UW developed technology of which one-half are biomedical or biotechnology innovations. He touted that those numbers rank UW in the top two or three nationally. Young praised the spirit of UW and set the stage for Senator Patty Murray stating, “We try to take what we do, to make the world a better place.”

Senator Murray reinforced Young’s remarks by reiterating the importance of biomedical research. Murray explained that continued investment by NIH in life science research is a necessary catalyst for economic growth and global competitiveness as well as sustained biomedical discovery and for the advancement of public health. Federal investment in biomedical research is essential, Murray explained, if we are to continue the biomedical revolution in our state and nation as well as keep pace with the investments—and progress—of other nations. For example, the United States’ investment in non-defense R&D spending as a share of gross domestic product (GDP) is seventh from the bottom of the 34 member countries of the Organisation for Economic Co-operation and Development (OECD). The United States’ declining investments in Research and Development (R&D) is troubling, especially considering the increasingly aggressive investments of other nations. China, for example, has increased their investment as much 20-25 percent. Recent data shows that China’s spending on R&D will surpass total U.S. spending by 2022.

In Washington State, biomedical research is no less important to our economy and public health. Murray mentioned that NIH invested $835 million in Washington State in 2013, with investments in R&D totaling $475 million per year with over one-half of the $475 million going toward life science research. She explained that the success of this investment is evident when we consider that there are over 1,300 bioscience companies in Washington that contribute billions of dollars to the economy.

Regardless of worthy research efforts, however, the quest for sustainable funding is an uphill battle. Murray contended that the importance of R&D is not reflected in the Federal budget. She warned that despite her successful efforts to form a bipartisan budget plan with House Budget Committee Chairman Paul Ryan—that eliminated some of the sequestration budget cuts impacting NIH—that sequestration will kick in again if elected leaders cannot formulate a deal that replaces sequestration in 2016.

The failure to prioritize federal investment in life science research and development is leading to troubling trends, Murray explained. She cited instances of companies closing their facilities and moving overseas, promising studies getting cut short because of a lack of funding, and bright students opting out of the sciences because of a dearth of opportunities. She proclaimed, “You know, if the United States were a business, investments in future economic growth would be the last thing we would try to cut, and that is exactly what research and development is. It is an investment in future economic growth, and I am determined to make sure we keep up with our global economic competitors.” Senator Murray closed by explaining the need for collaboration, compelling story telling, and advocacy that can shift the debate to ensure that federal investments in R&D and, in turn, future economic growth are not considered a line item in the federal budget that is “ripe for cutting.” Murray continued, “The conversations we are having today are so important. We need to share the incredible success stories that can build broader support for investments in innovation and future economic growth.” She ended on the note that these investments are not only important for our economy, but more importantly for the health and well-being of our communities.

Dr. Collins laid out a compelling narrative and built upon Senator Murray’s message to continue sustainable investment in the NIH. Collins highlighted several public health accomplishments over the last 60 years including a near seventy-percent drop in cardiovascular disease and stroke, a one percent per year decline in the number of cancer deaths over the last fifteen years, and the discovery of HIV antiviral drugs that enable a young person who contracts HIV to have a full life expectancy, as well as the promise of potential cures for HIV and the prospect of HIV eradication. Additionally, he discussed several ground breaking technologies, including immunotherapies that prompt a patient’s own immune cells to attack and kill indwelling cancer cells; and advances in whole genome sequencing that are causing a rapid downward cost curve of the technology—from nearly $100 million per genome in 2003, to as little as $1000 per human genome in the near future.

The Director shared the NIH’s attempt to reduce the bottlenecks that increase the time and costs of bringing treatments to the market. For example, he cited the development of human tissue types using pluripotent stem cells. These 3-D dimensional organoides, made up of ten to twelve tissue types, can then be loaded up to biochips, and hardwired with bionodes that are capable of monitoring cellular responses to various test compounds. Essentially, the biochips are a Fitbit for tissue culture cells. This technology could greatly improve the efficiency of drug screening, while reducing the time and costs of bringing a treatment to market. Additionally, one can conclude, the technology may deliver the added benefit of reducing the need for research with animals by gaining more information than can be accomplished with current tissue culture methods. These examples, both the inspiring and daunting, paint what Dr. Collins called a compelling case for a sustainable path forward for NIH funding.

These advances in biomedicine and technology are incredible and there is more work to be done. Dr. Collins discussed antimicrobial resistant bacteria, which poses a serious public health threat and will require a concerted, collaborative effort from the public and private sector. “According to the Centers for Disease Control and Prevention (CDC), antibiotic resistant infections are associated with 23,000 deaths and 2 million illnesses per year in the United States.” Estimated impacts to the economy range as high as $20 billion in excess direct health care costs, and as much as $35 billion in lost productivity.

In fact, the public health threat engendered by Antibiotic-Resistant Bacteria has forced President Obama’s hand on the matter. On September 18th, President Obama signed an Executive Order and released the National Strategy on Combating Antibiotic-Resistant Bacteria. In addition to the National Strategy, the President’s Council of Advisors on Science and Technology (PCAST) is releasing a report on Combating Antibiotic Resistance, which provides actionable recommendations for researchers and physicians.

The Executive Order directs key Federal departments and agencies to take actions that will combat the growing public health threat and directs federal agencies to implement the National Strategy and to address the PCAST report. According to the White House, “The National Strategy provides a five-year plan for enhancing domestic and international capacity to: prevent and contain outbreaks of antibiotic-resistant infections; maintain the efficacy of current and new antibiotics; and develop and deploy next-generation diagnostics, antibiotics, vaccines, and other therapeutics. The Executive Order: establishes a New Task Force for combatting Antibiotic-Resistant Bacteria; establishes the Presidential Advisory Council on Combating Antibiotic-Resistant Bacteria; improves antibiotic stewardship; strengthens national-surveillance efforts for resistant bacteria; promotes the development of new and next-generation antibiotics and diagnostics; and strengthens international cooperation. Additionally, the Administration announced a $20 million prize that will be co-sponsored by NIH and the Biomedical Advanced Research and Development Authority, to facilitate, “the development of rapid, point-of-care diagnostics tests for healthcare providers to identify highly resistant bacteria infections.”

antibio-resistance-fun (2)

President Obama’s actions and those of the health care community will be paramount to addressing the public health threat of antibiotic-resistant bacteria. Promising research and the ability to address public health concerns, however, are often delayed due to an uncertain funding climate for life science research. Collins showed the audience a graph depicting the fluctuations in NIH appropriations over the years, which highlighted appropriations variability including a flat line since 2003, and a jarring dip following sequestration. Collins proposed a path forward that allows for long term planning, and explained that had the budget stayed on a 3% growth trajectory since the 1960s we would be essentially slightly better than where we are today, but would have eliminated many of the ebbs and flows that often stifle investments in innovation and research.

Collins concluded that the case for a sustainable and concerted approach to funding the NIH and, thus, R&D is very strong. With sustained investment, society awaits lifesaving cures and technological advancements that have the potential to improve the health care system, lower long-term costs, cure diseases, sustain our economic competitiveness, and improve societal well-being. In addition, investments in biomedical discovery enrich diverse career opportunities for those with scientific training including journalism, communications, education, law, policy and more.

NWABR encourages its readers to take note of the upcoming federal budget debate that will fundamentally determine the path forward for the NIH and life science research. Among many competing priorities, it is clear that federal investment in the NIH and, in turn, biomedical discoveries and innovations deserve high priority. Benefits from research are many, and the costs of a lackluster investment in research are great. Grassroots advocates and supporters of biomedical research should share their compelling stories with their friends and family and engage the community in this discussion. Life science research needs a sustainable and predictable funding climate at the NIH. This mean that the looming threat of sequestration needs to be eliminated by striking a sustainable bipartisan budget that accounts for inflation and growth, while addressing our long-term national deficits. NWABR stands ready to share compelling stories and support the life science research community in this discussion.

Thank you,

Troy Chapman