Category Archives: Policy

Getting to the Point of Precision Medicine

The Twitterverse was aflutter during President Obama’s State of the Union (SOTU) address. According to social media listening tool Sysomos, there were approximately 2.1 million #SOTU- related mentions on Twitter during the one hour speech covering a wide range of economic, social and health care related topics. What’s more interesting, First lady Obama hosted a health data scientist who’d once worked for Google, IBM and now with the U.S. Digital Service. Presumptuously, the health care industry expected an announcement about advancing the role of health IT and interoperability among the provider community. Instead, what we heard was President Obama calling for an increased focus on research and development in “precision medicine” projects – a fledgling, and important, industry sector within the disease and molecular diagnostic community.

Specifically, the President’s agenda aimed at “using digital and genomic data to develop highly targeted disease treatments. The proposal would invest in ‘precision medicine’, an innovative field that provides healthcare professionals with tools, knowledge and treatments to tailor care to a person’s unique characteristics — such as their genetic makeup,” according to The White House blog.

As stated in The White House Release, “recent advances in genomics and digital data have produced powerful new discoveries about health and disease that have made it possible to design highly effective, targeted treatments for cancer and other diseases.” Obama’s proposal “will engage patients and healthcare providers in delivering this new era of medicine.”

Precision medicine has been a movement afoot that re-coined ‘personalized medicine’ to ‘precision medicine’, a new term to give the concept a fresh start by medical academia and health tech industry. Essentially, it is using the same knowledge we have gained by mapping the human DNA to use but with more advanced technologies. Either way you slice it, precision medicine, or personalized medicine 2.0, combats the 20th century ‘one size fits all’ mindset to drug therapy, and applies the data extrapolated  from genome mapping into more effective medicines to help speed up patient recovery, stave off diseases, and advance new drug discovery.

According to Dr. Lakdawalla of the National Pharmaceutical Council, whose organization’s primary mission is to improve quality of care and control costs by driving public and private research in comparative effectiveness, or ‘patient-centered outcomes research’ (PCOR), claims “there are new methods and economic analysis of data that allows researchers to estimate individual effects of drugs. We can look at 100,000 people’s information and compare two different treatments and figure out what each treatment is going to do to the individuals as if they were on each drug at the same time.”

However, even with these advances in mind, the health care community is still having difficulty putting actionable data to use. According to Dr. Lakdawalla, “there are many struggles within the health care community – among medical academia, researchers, providers and insurers – to meet the needs of the entire population and the individual by getting the right therapy to the right person at the right time.“

While the health tech and biogenetic forces continue to evolve their methodologies to support the advancement of patient-centered outcomes, The Myth of Average: Why Individual Patient Differences Matter outlines practical methods that can help identify patient diversity. What it boils down to is that patients today should be having an informed conversation with their health care provider (HCP), but patients are simply not aware of the right questions to ask their HCP in time of need. There should be an informed discussion among the physician and patient to decide on the best treatment based on the patient preferences and their personal response to certain drugs.

In order to advance precision medicine and make a tangible difference in patients’ lives, we must focus on developing a practical approach that begins with educating patients on the right questions to ask their HCPs, and empowering HCPs to factor in their patients’ individual needs when discussing their treatment options.

It is safe to say that in the end, regardless of political affiliation, we all want what President Obama called for in his address, “to cure diseases like cancer and diabetes — and to give all of us access to the personalized information we need to keep ourselves and our families healthier.”


It’s here! The 2015 Freshman Healthbook for the new class of the 114th Congress

Includes analysis of healthcare positions; identifies potential health policy leaders

Fellow healthcare advocates, consider this an early holiday gift from us at TogoRun. Today we released our second “Freshman Healthbook,” a free advocacy resource that analyzes the healthcare priorities of newly elected members of the 114th Congress with a specific focus on issues such as the Affordable Care Act (ACA), medical innovation, children’s health, mental health, Medicare, physician reimbursement, reproductive rights and veterans’ health.

The first edition profiling the 113th freshman class was downloaded more than 2,000 times by reporters, lobbyists, advocates and healthcare organizations. The TogoRun team has been working tirelessly since before the election to uncover the previous voting records, public statements, personal health experiences and other “fun facts” about the 2015 freshman class.

Highlights from the 2015 Freshman Healthbook include:

  • Health policy positions of the 114th Congressional freshman class, which includes five with direct healthcare experience.
  • 10 freshmen to watch as the potential new healthcare power players.
  • Comparisons to the 113th freshman class such as political make-up, diversity and gender.
  • Freshmen with an appreciation of medical technology’s value.

TogoRun’s top 10 “Ones to Watch” for the 114th Congressional freshman class are:

Shelley Capito (WV-R)

Rick Allen (R-GA-12)
Buddy Carter (R-GA-1)
Barbara Comstock (R-VA-10)
Debbie Dingell (D-MI-12)
Robert Dold (R-IL-10)
Tom Emmer (R-MN-6)
Seth Moulton (D-MA-6)
Jon Moolenaar (R-MI-4)
Mark Takai (D-HI-1)

This resource is insightful, helpful, and frankly, a fun read for anyone who works on or around Capitol Hill. I dare say…not even just for healthcare people. This year we included additional interesting profile factoids that might offer great fodder for the season’s Beltway cocktail party.

TogoRun will release a 2.0 version of the Freshman Healthbook in January 2015 that includes committee assignments and additional information provided to us or uncovered from new publically available information. We welcome all feedback and input, email me at

Download the 2015 Freshman Healthbook today and get ready to dog-ear some pages.

Anne Woodbury


Compassionate Use: Experimental Drug Access from the Ebola Crisis to #Save[Patient]

During his visit to the U.S. Centers for Disease and Control today in Atlanta, President Barack Obama announced a major expansion of military and medical resources to combat the spread of the Ebola virus, including the development of 17 treatment centers, training for thousands of healthcare workers and the creation of a military control center for coordination.

Considering short- and long-term treatment options, $58 million will be allocated to speed the production of antibody-based ZMapp, as well as two Ebola vaccine candidates.

ZMapp, founded by Mapp Biopharmaceutical, Inc., was first in the spotlight when two American aid workers who had been based in Liberia received the experimental drug under the FDA’s “compassionate use” regulation, which provides access to experimental drugs outside clinical trials. Of the seven people who have now been treated with the drug, two have died.

Though the Ebola virus is rare among rare diseases, since the AIDS epidemic in the 1980s, patients with terminal and hard-to-treat illnesses have sought access to drugs in development. But the decision to grant this access is far from simple.

To receive a drug through compassionate use, a patient must have support from a physician, FDA consent and a pharmaceutical company willing to provide the treatment – a step where many patients run into roadblocks.

If a request is turned down by drugmakers, the companies are seen as heartless. But several issues must be considered: a poor outcome under compassionate use could put a hold on the approval process for the broader population; a limited supply of the experimental medication; and a lack of data on its safety and efficacy.

Considering ZMapp, Forbes columnist David Kroll raises this question: “Out of thousands infected, how did the company decide which six or seven patients would receive their medicine?”

Chimerix, a small, biopharmaceutical company, based in Durham, North Carolina, faced intense scrutiny in April when it initially refused an experimental medicine to and eight-year-old pediatric cancer patient who developed a viral infection following a bone marrow transplant, and due to kidney complications from the standard course of therapy, the family sought access to brincidofovir, Chimerix’s anti-viral drug still in development.

The family amassed a substantial social media following that led to national coverage and death threats to company leadership. Though the eight-year-old did not receive the medication through compassionate use, Chimerix worked with the FDA to immediately approve a clinical trial for pediatric patients, in which the boy was the first to enroll.

The public relations crisis led to CEO Kenneth Moch’s resignation and questions raised around the concept of crowdsourcing medical decisions. In the era of social media, should patients with more compelling stories or the ability to gain social media traction receive a life-saving treatment over those with the same or greater needs?

In his first public essay since he left Chimerix, Moch, along with NYU ethicist Arthur Caplan, reflect on these challenges in a Health Affairs editorial: “Without a new system and clarity within the regulatory process, medical decision-making will be left to those individuals and mechanisms — to social media, newscasters and print reporters, and politicians — least appropriate to decide complex medical facts.”

Families no longer need to host a community walk to raise funds and awareness for their loved one. Movements now begin with a compelling photo and #Save[PatientName] Twitter hashtag. As healthcare communicators, our role is not only to bring visibility to these untold patient stories, but also to share the perspective of the companies who must make these difficult access decisions.

Drugmakers need strategic guidance to communicate the complexities of the process and limitations, with a greater sense of transparency and understanding. Regulatory agencies need support addressing concerns and risks, and patient advocacy organizations will continue to need their voices amplified.

As Forbes’ Kroll puts it, we are not yet there in finding a middle ground on compassionate use that does not favor those who mount a social media following. But to reach this greater sense of transparency and collaboration, all parties will need cross-channel communications counsel – from combatting the Ebola virus to navigating the difficult challenge of providing a drug to one patient over another.


Communicating the role of sugar in the obesity epidemic

Obesity is a global epidemic that impacts all people—either directly or indirectly—regardless of race, gender or nationality. Through the lens of a health care communications pro in the UK, TogoRun UK’s Jessica Greenman weighs in with her perspective.

With an impending obesity epidemic casting a dark cloud of financial doom over Europe, new figures report that by 2050, the obesity problem could cost the UK approximately £50 billion a year. The epidemic is becoming a regular feature in the tabloids, and more recently, sugar has been targeted as one of the main contributors to our overweight nation. So in the midst of the crisis, what measures can be put in place to avert such a catastrophe?


In recent months, efforts have been initiated to curb the sugar problemincluding Action on Sugar, a new group lobbying the government and food industry to reduce the hidden or “unnecessary” sugars found in processed foods. The group is calling for food and drink manufacturers to re-size their products, offering smaller portions of foods that contain high levels of sugar. Activists believe that these suggested cuts could halt or reverse the growing obesity epidemic in less than five years and reduce the risk of patients developing type 2 diabetes; a common comorbidity of obesity and a substantial drain on National Health Service (NHS) funds.

Campaigners have also made claims that sugar is even more of an issue than another health care crisis: smoking. However, unlike sugar, tobacco is not added into processed foods and consumed by the overwhelming majority of the population. Smoking is a choice, whilst many people are unaware of the level of added sugar in the foods they are eating.

In March, the World Health Organization (WHO) announced new sugar intake recommendations. The guidance indicated that sugar should make up no more than 10 percent of our total daily calorie intake, and limiting sugar intake further (to 5 percent) could offer additional health benefits. To give some perspective, drinking one can of full calorie soda would exceed this 10 percent daily limit.

Even if measures are taken to reduce the levels of hidden sugars, foods such as cakes and chocolate candy still contain very obvious, unhidden sugars. So, how do we encourage people to stop eating these sorts of snacks? Or rather, is promoting moderation the key? With whatever direction we choose, it is imperative that communications professionals partner with policy makers to combat this rising epidemic.

As in the case of smoking, public health campaigns played a key role in educating the public about the dangers of tobacco. In 2012, the NHS launched the Stoptober campaign, which encouraged smokers to go smoke free for 28 days throughout October. Participants were provided with a ‘quit kit,’ as well as encouraging text messages each day. The campaign was so successful that it continued through 2013, where a quarter of a million people in England and Wales registered to take part in the challenge. In parallel, the NHS also launched Mutation, a more hard-hitting campaign in 2012.  The campaign dramatised the harms of smoking by making the invisible visible, showing a tumour growing from a cigarette. The advertising achieved awareness of 92 percentthe highest for any smoke free campaign in five years and the commercial was viewed more than four million times on YouTube. It was also recorded that:

  • 41 percent of people that saw the commercial were more likely to quit smoking
  • 61 percent agreed that the commercials made them realize that every cigarette is harmful

Clearly high levels of sugar in foods are posing a significant risk to our health, but can we really talk about sugar the same way we talk about tobacco? Critics argue that we should not draw comparisons because in moderation, sugar makes up part of a healthy and balanced diet, whilst tobacco is a proven poison that offers no health or dietary benefits. If consumed as part of a healthy and informed diet, then sugar should not pose any problems to our health.

Currently, action groups, such as the Children’s Food Campaign are lobbying for a tax on sugar found in food and drink, and England’s chief medical officer, Sally Davies, has shown her support for the campaign, suggesting it would help to combat obesity. That said, the government seems disinclined to use food taxes as a way to combat unhealthy eating habits.

Whatever the direction, we must address the rising number of people that are not making informed decisions about their diets. Changing policy and taxing sugar like tobacco seems like an extreme measure that doesn’t necessarily halt or reverse the impending epidemic. In order to create true behavior change, we must couple any changes in policy with a well-constructed, public campaign that highlights the underlying damage being caused by sugar, and encourages individuals to make informed decisions about the foods they decide to eat.

From a communications perspective, it is imperative that the government and advocacy communities’ work together to form a public/private partnership that communicates the merits of the policy and provides education and awareness around this important health issue.


To Tweet or not to Tweet: Europe’s digital conundrum

Twitter-BirdFor most pharmaceutical companies in Europe, the use of Twitter verges on an existential crisis. With social media regulations that vary from country to country and language barriers to overcome, companies often find themselves asking, ‘Why do I need Twitter and what value can Tweeting bring?’

Why do I need Twitter?

When you look at what pharmaceutical companies have flocked to Twitter, the majority of the tweets are coming out of the United States. As one of only two countries (the other being New Zealand) that is allowed to advertise directly to the consumer, the U.S. tends to throw caution to the wind when considering the use of social media channels such as Twitter. Whilst the tweets tend to be quite corporate in nature – covering items such as press releases, company overviews and CEO blog posts – the appeal of this format is obvious. It gives companies the opportunity to control their message and disseminate news directly to their followers for a fairly nominal cost.

On the flip side, if European pharma should try this tactic, the price could be much more significant.  Individual countries in Europe have restrictions in place to stop direct-to-consumer advertising. That, combined with the threat of considerable fines, may be more risk that companies are willing absorb. A well-known global pharmaceutical company found this out the hard way when it was reprimanded for tweeting about two medications in 2011. Though the company escaped without a fine, the decision in the UK by the Prescription Medicines Code of Practice Authority (PMCPA) set a cautious tone, instilling fear that even the slightest mention of a drug can result in a public rebuke.

Companies are now bound by the following PMCPA guidance on digital communications:

“If a company wanted to promote a medicine via Twitter it would have to ensure that if the medicine was prescription only, the audience was restricted to health professionals only.”

In a medium like Twitter, this is simply not possible.

What value can Tweeting bring?

Pharmaceutical companies have a lot to gain by using a channel like Twitter.  The apparent limitation of being unable to advertise could slipstream the companies into a more concise role. Rather than delivering details of their corporate environment, they stand to help patients better manage their disease and improve their profile by becoming thought leaders within a disease area. By improving the dissemination of information in the health environment, pharmaceutical companies stand to gain from an educated audience who are able to more easily recognize their symptoms.

‘To be or not to be’ – this is an allusion of a choice. With the equivalent of 8,123 copies of War and Peace tweeted every day, Twitter has become one of the most valuable business resources available today. The pharma industry has a lot to lose by sitting on the sidelines.