Category Archives: In the News

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.”


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.


At Institute of Medicine obesity panel, a coordinated public effort is the doctor’s orders

The obesity epidemic is one of the most pressing problems the health care sector faces. Accounting for $190 billion in health care spending annually, obesity is one of the leading causes of preventable death in the United States.

While the numbers are staggering and the implications of obesity are grave, we are at a potential turning point in the fight.

The Institute of Medicine recently hosted a roundtable panel entitled “The Current State of Obesity Solutions in the United States.” During the discussion, leaders from the private sector, governments and non-profit groups reported on the progress of solutions and the actions being taken to rally against this disease.

Many panel members were optimistic about the state of potential solutions. A heavy emphasis was placed on strengthening patient engagement, expanding a “systems approach” in which obesity registries, data metrics and expanded health teams are used, and bolstering efforts to combat childhood obesity with increased exercise and nutrition standards.

Obesity as a disease needs a joint clinical-community response

The resonating theme from the panel was the need for a strengthened clinical-community relationship in which a larger part of the community participates in promoting a healthy lifestyle. Dr. Howard Koh, assistant secretary for health, spoke about the role society plays as health providers. “Health care goes beyond the doctor’s office; health starts where people live, learn, labor, play and pray.”

Dr. Howard Koh

Instead of stigmatizing obesity as an individual problem, Dr. Koh advocated for the treatment of obesity as a disease, requiring more than a simple diet plan and exercise routine.

The panel concurred that obesity is not just a health problem; it is a social problem that requires a comprehensive social response. Dr. Bill Dietz, chief consultant for the Institute of Medicine, compared the obesity epidemic and potential plateau in obesity rates in children to the rise and fall of tobacco use during the mid-20th century.

Lessons society can learn from anti-smoking campaigns

Smoking was first considered a critical public health issue when the link between smoking and cancer was originally reported in the 1950s. The rate of tobacco use leveled off during that period, but remained high well into the 1990s until rates gradually decreased.

Dr. Dietz explained that this drop off was the result of a very coordinated social campaign to inform the public about the severely negative impacts of smoking, while also providing resources to help users quit. With support from inside and outside the health care community, the campaign brought together doctors, celebrity spokespeople and educators to fundamentally alter perceptions and attitudes about smoking.

While anti-smoking campaigns tend to focus on scare tactics and graphic content to stigmatize smoking, I believe obesity campaigns should focus on providing support structures and promoting the tremendous rewards of living a healthy lifestyle.

Employers role in fighting obesity

One piece of good news is that public policy has recognized the necessity of broadening health care engagement outside of the doctor-patient relationship. A provision within the Affordable Care Act allows employers to charge obese employees an additional thirty to fifty percent in health care contributions to cover the increased cost of being obese, which on average is $1,152 more a year for men and $3,613 more for women.

The goal here is not to punish people for being obese, but rather to encourage individuals and employers alike to recognize the real costs of being obese.

One of those employers is Hy-Vee Inc., a grocery store chain in the Midwest. Speaking at the panel on behalf of Hy-Vee was assistant vice president of health and wellness Helen Eddy. Eddy explained how Hy-Vee uses a comprehensive method to promote the health of its employees; from healthy food choices in the work place, to an exercise-friendly work environment and behavior modification designed to address unhealthy choices.

The results are impressive. The cost of employer health care contributions is $6,400 per employee, nearly half the national average of $10,000 to $12,000 per employee. Hy-Vee has been able to give its employees a one month premium holiday five of the last six years.

There are some exciting things happening in the fight against this disease, but one big obstacle remains. Obesity needs to be recognized as a widespread social crisis, not just an individual problem. Increased social awareness and engagement can change that.

With obesity rates in children decreasing in many states, there is a glimmer of hope. Something is working. The question is will obesity rates plateau for decades to come just as tobacco use has in the past? Is stagnation good enough? What is your opinion?


State level Spanish-language online resources still lacking as CuidadoDeSalud launches

This past weekend,, the Spanish-language version of was launched in an effort to bring full enrollment functionality to millions of uninsured Spanish speakers across the country.

The U.S. Department of Health and Human Services has said that it will use feedback from Spanish-language organizations using the site during an initial soft-launch phase to make improvements before it is marketed widely to Spanish-language speakers.

As HHS develops its marketing and communications plans for the site, it would be wise to consider how the state-based exchanges are communicating to and enrolling Spanish speakers, and what it will mean for the success of ACA. Our initial research has shown online outreach in Spanish at the state level was virtually non-existent. Unfortunately, very little has changed in two months since the first report.

Here’s what we discovered about online enrollment outreach efforts to Spanish speakers across the country through our most recent research being completed on December 9th:

  • 96 percent of all state-based health insurance exchanges do not have Spanish-language pages for Facebook or Twitter.
  • California continues to be the only state-based exchange with dedicated Spanish-language social media channels.
  • Nine of 17 (more than 50 percent) state-based health insurance exchanges do not have a Spanish-language website.
  • Only 14 out of 120 (12 percent) government-funded navigator groups provide a Spanish-language website and none have a dedicated Spanish-language social media presence.

In public education campaigns, all channels of communication are important and online outreach through websites and social media should not be overlooked. By not providing online information in Spanish about ACA, open enrollment and access to affordable health care, state exchanges and navigator groups may be missing a large portion of the uninsured. This is a potentially critical misstep given the rate at which Spanish speakers are connected online: thirty million of 47.8 million Hispanics living in the U.S. were online in 2010, 54 percent use Facebook regularly and 59 percent have a smart phone.