Campaigning for Fairness = Winning

The Murnaghan family of Pennsylvania recently brought light to the issue of unfair preferential treatment for adults on transplant lists. Sarah Murnaghan, age 10, had a severe case of cystic fibrosis. She would have died within weeks had she not received a lung transplant. She had been at the top of the pediatric waiting list for over 18 months, but the chances of receiving a child’s lung were slim, as they are very rare.

Federal court judge Michael Baylson made a ruling exempting Sarah from the “Under 12 Rule” stating that she is a legitimate candidate for a transplant and that current laws are discriminatory towards children.

CNN reported that Sarah’s lung allocation score — a number that determines the order in which lung offers are made to candidates — went up from 78 to 91 in a matter of 4 days, which significantly increased her chances of receiving a transplant. Sarah went into surgery this week and the family is ecstatic that their campaigning was successful. This is a great example of how powerful  storytelling can be.

The Ripple Effect

This exemption for Sarah has inspired other families with suffering children to campaign against current transplant laws. After his family’s fight for his right to a transplant, 11 year old Javier Costa has been granted a spot on the adult transplant list as well.

My Take

Transplants should operate like emergency rooms, giving priority treatment to those who need it the most, regardless of age. I believe that a child has the right to a full and happy life if the resources are available to make that happen.

The Murnaghan family started a petition to garner support for this cause to eliminate discrimination against children for good. Click here to sign the petition.

What do you think?

Personalizing messages on the web…

One thing that hasn’t changed is the importance of customer relations in business, which starts with learning about your target client. Whether it’s remembering that your client likes nunchucks or noticing a new job title, people like personalization. And that’s exactly what interactive marketing aims to do.

Harvard’s John Deighton defines interactive marketing as “the ability to address the customer, remember what the customer says and address the customer again in a way that illustrates that we remember what the customer has told us.”

This means tailoring offerings based on recorded customer preferences, like when Amazon suggests This Side of Paradise based on your previous purchase of The Great Gatsby.

…and driving conversations!

Interactive marketing refers to the shift from one-way messaging to a conversation, made easier and expedited with technology. Engaging audiences means a business can exchange ideas with customers and get feedback to inform its overall marketing approach.

Audiences interact online with each other, too, of course! They share messages and influence each other’s perception of brands. Like an old-fashioned game of telephone, a social media message is often modified as it circulates. This is why it’s important to “listen” to online conversations and contribute in ways that steer dialogue in a favorable way.

Step up to the edge.

Interactive marketing is constantly evolving, and you have to evolve with it to remain on the cutting edge of business. The trick is to understand your audience and develop a well-planned, focused program to provide content that’s audience-centric and works with your branding and sales initiatives.

How are you engaging target audiences online to further your business?

During her story recently published in the New York Times, Jolie talks about her mother’s cancer diagnosis and how hard it is to know her children will never meet their grandmother. After testing positive for mutated BRCA1 and BRCA2, genes shown to be involved in inherited breast cancer, she decided to take action.

On Tuesday, Jolie announced she had a double mastectomy – a medical procedure that surgically removes both breasts. The three-month process significantly reduced her 50 percent chance of developing ovarian cancer and reduced her risk of developing breast cancer from 87 to 5 percent.

Though removing breasts may make a woman feel less feminine, Jolie shows that a mastectomy won’t make you less yourself. I’ve always admired Jolie for her work around the world and care for others. Now more than ever, she shows care for others by sharing personal matters and using her influence to encourage woman to think about their bodies and the future. I certainly will think more about how to take care of myself!

Look at that, Angelina. You have made the modern woman a little bit smarter. You go girl!

“Luke and Liz both play an integral role in Spectrum’s success,” said John J. Seng, Founder and President. “Leading by example, they demonstrate best-in-class practice – whether it’s in dealings with clients or colleagues – and it’s reflected in the results they achieve.”

Bryan joined Spectrum as an intern in 2004, and returned to Spectrum in 2007 after working on communication efforts at the University of Minnesota Academic Health Center in Minneapolis. She has continuously grown Spectrum’s relationship with clients – such as Merrimack and P&G Oral Care – during numerous successful product launch, consumer education and scientific communications campaigns.

“I learn something new every day working in health and science communications. There’s never a dull moment,” said Bryan. “I’m enthusiastic about our clients, my new role and Spectrum’s future.”

Dickinson joined Spectrum as an intern in 2004 and returned to Spectrum in 2011 after several years working in the health and public affairs arena for other agencies in Washington, including MSL and Levick Strategic Communications. Since rejoining the firm, Luke has demonstrated strong leadership and success with scientific communications, issues management and advocacy relations across a range of clients, including Procter & Gamble, Genomic Health and CropLife America.

“It’s been great being back with the Spectrum team,” said Dickinson. “Spectrum’s a special place, and I look forward to continuing my tenure, now as a Vice President.”

Last week, Spectrum team members Pam Lippincott and Liz Bryan attended the PRSA Health Academy Annual Conference in Indianapolis to accept the Frank J. Weaver Lifetime Achievement Award on behalf of John. This distinguished award honors an individual who has made outstanding contributions to the field of health care public relations and changed the practice of public relations in America.

As chair of GLOBALHealthPR, John was attending the network’s annual meeting, but sent thanks to the Health Academy from Lisbon, Portugal.

Pam and Liz are excited to co-chair next year’s PRSA Health Academy Annual Conference in Washington, D.C.

For the second and final day of our Annual General Meeting (AGM), Lisbon-based host Jorge Azevedo (Guess What, Portugal) really iced the cake by scheduling our guest speaker Nadim Habib (CEO and Economics Professor of the NOVA School of Business and Economics, Portugal; as well as a good friend and colleague of Jorge’s from his Hill & Knowlton days).

Professor Habib addressed our group frankly: “We as parents are to blame for ‘empowered’ patients, or should I say ‘impatients,’” he wisecracked. “The kids we’ve never said “no” to are now making health care decisions. Patients today don’t even know the value of what they’re dealing with,” he reasoned. “Google is the biggest problem,” he said, only half-joking. It all adds up to broken and illogical health payment systems and structure. “If they get a certain number of days for free visits to the emergency room or doctor office visits, they will use every bit of this ‘free’ health care for the most inconsequential or routine health needs,” he concluded, based on his research tracking the rise of routine care being provided in emergency rooms throughout Portugal and much of Europe.

Professor Habib spellbound us with his plain-spokenness on dysfunctional health care systems.

Prof. Habib also lamented the decline of general medical practitioners vs. specialty medicine.

He held us, 17 GLOBALHealthPR partners, captive with his assertion that big pharma needed to start thinking outside the box. As an example, he derided prescription package inserts with warning labels as patient-unfriendly and ineffective. “No one ever reads these – they are not written for patients. They are written for lawyers and regulators,” he charged.

“Better to follow the example of such companies as Amazon and Apple,” Prof. Habib said. He suggested that GLOBALHealthPR partners challenge our pharmaceutical clients.

Prof. Habib spent the last half hour of his presentation proposing that GLOBALHealthPR consider taking specific directions in marketing and selling to health industry. (I won’t go into any detail here – suffice to say he gave us plenty of food for thought.)

In my previous installment from Lisbon, I neglected to mention that our host Jorge arranged for the GLOBALHealthPR Annual General Meeting (AGM) at the Fundaçao Portuguesa das Comunicações (Portuguese Communications Foundation). The Foundation promotes “the study, conservation and dissemination of historical, scientific and technological heritage in the field of communications.”

On day one, we welcomed Yap Boh Tiong and Patsy Phay of Mileage Communications into the partnership. By the end of day two, they’d contributed lots of good ideas based on their decades of international corporate and product marketing experience in Asia Pacific.

With our new friend and GLOBALHealthPR partner Yap Boh Tiong, co-founder of Mileage Communications, based in Singapore.

Besides Prof. Habib’s remarks, here are a few more highlights of the second day of our AGM: Marie-Hélène Coste (MHC, France) presented her perspective on the recent scandals with health industry in France, in particular the patient deaths with the Servier Mediator weight loss drug, and the “tentative climate” as a result of French government officials implicated in financial misdeeds. She noted that her office clientele with medical “learning societies” remains strong.

Marie-Hélène Coste discusses her analysis of the political and health affairs crisis in France.

Priti Mohile and Dinesh Chindarkar (MediaMedic, India) shared an invigorating overview recommending ways that GLOBALHealthPR partners could increase the online buzz for ourselves and our clients through the world. Dinesh predicted increased public use of Pinterest and demand for video. Priti emphasized that GLOBALHealthPR partners should take advantage of our deep knowledge of healthcare that even much larger digital shops lack.

Priti Mohile shares new perspectives on digital communications potential.

Dinesh Chindarkar is carefully tracking Pinterest, Slideshare and other social media trends.

Paola de la Barreda (PR Partners, Mexico, standing right) and Paul Jans (VIVA!, Australia, left) shared their thoughts about how each leads her and his respective office’s collaborative efforts in GLOBALHealthPR, including enhancing utilization of our online data management and task-sharing online resources. They also stressed how GLOBALHealthPR provides a unique platform for sharing public relations strategies and business management and entrepreneurial best practices.

Eugenia de la Fuente and Marie-Hélène Coste

Patricia Blanco from Paradigma PEL, with Tânia Espinheira of Guess What

Following months of research and development, Eugenia de la Fuente (Paradigma PEL, Argentina), joined by Patricia Blanco and Laura Torres Cárdenas, shared her team’s proposal for a state-of-the-art measurement method of public relations campaign effectiveness. Both traditional and online/social media were included in the model analysis to evaluate a media program. The partners agreed to further develop and incorporate this new evaluation model.

Laura Torres Cárdenas of Paradigma PEL, and Neil Crump, Aurora

Juan Luis Recio Diaz (Berbes Asociados, Spain) and Danilo Tovo (Tino Comunication, Brazil)

Ken Rabin (Alfa, Poland) standing left, and Neil Crump, right, lead our discussion on business development.

After I finished summarizing the two days of sharing and resolutions to grow our business…together, Jorge took to the floor to announce the 5^th anniversary of his firm, Guess What.

Right on cue, and to everyone’s surprise and delight, Jorge’s colleagues Nelia Silva and Tânia Espinheira rolled in a surprise birthday cake.

Dinesh prepares a treat.

The Fundaçao Portuguesa das Comunicações provided the perfect setting for our meeting.

Following another successful GLOBALHealthPR AGM, we headed across town to the Lisbon Story Centre museum for a realistic immersion in Lisbon’s rich history.

Many thanks to our Guess What hosts here in wonderful Lisbon: Renato Póvoas, Nélia Silva, Jorge Azevedo and Tânia Espinheira.

The Fundaçao Portuguesa das Comunicações provided the perfect setting for our meeting.

Principals of GLOBALHealthPR public relations firms gathered in Lisbon, Portugal, this week for our annual general meeting, hosted for 2013 by Guess What and one of its founders, Jorge Azevedo.

Marie-Hélène Coste (MHC, France), Jorge Azevedo (host from Guess What, Portugal), Paul Jans (VIVA!, Australia), Eugenia de la Fuente (Paradigma PEL, Argentina) and Dinesh Chindarkar (MediaMedic, India)

Yap Boh Tiong and Patsy Phay (Mileage Communications, Singapore) and Paola de la Barreda (PR Partners, Mexico)

Yap Boh Tiong and Patsy Phay Mileage Communications, Singapore) and Paola de la Barreda (PR Partners, Mexico)

As our first order of business, we welcomed Patsy Phay and Yap Boh Tiong of Singapore-based Mileage Communications as our newest GLOBALHealthPR partners. Mileage is the leading independent public relations firm with offices also in Thailand, Vietnam, India, Malaysia, Indonesia and China. “As with our other new partners here, Mileage offers ‘indigenous’ expertise in communications counsel,” said Boh Tiong. “For instance, we do not insert a PR manager from Singapore to another country. We believe in offering genuine local expertise, and we stand apart that way,” he said.

GLOBALHealthPR now offers its clients health and life science specialty public relations in 23 countries worldwide.

Amid updates on each of the partner firms, the conversation turned most lively over discussion of the potential of digital and mobile media. Whether in India, Singapore, Argentina, the UK, Spain or Australia, all partners agreed that reaching audiences with best-in-class mobile, digital and social media/listening activities are critical to effective PR outreach by health industry and medical societies in the future.

The partners also shared many of the challenges facing pharmaceutical company marketers, country-by-country, including dealing with market access.

Ken Rabin, PhD, representing Alfa in Poland, discussed the opportunity to submit health care public relations research papers to authoritative journals, as Juan Luis Recio Diaz (Berbes Asociados, Spain) and Danilo Tovo (Tino Comunications, Brazil) look on.

We also premiered the availability of volume 3.0 of the Global Guide to Pharma Marketing Codes, the only country-specific guide to pharmaceutical communications available.

All-in-all, an invigorating day. Despite the economic ordeal facing many countries, health care remains a consistent priority and communications opportunity. I’ll provide an update tomorrow, as we renew our commitment to work well together, on behalf of our collective clients.

As you may know, John has dedicated his life and career to improving the health and lives of others with the best tool that he has – his ability to relate and effectively communicate with others. Since founding Spectrum in 1997 to focus solely on health and science communications, John has created a special environment that fosters a passion for health care, science, creativity and an entrepreneurial spirit that continues to inspire his employees day in and out, while representing great clients and amazing causes.

Please join us in congratulating John on this achievement! And check out a few highlights of John’s career so far:

While with Pfizer Pharmaceuticals, John meets Surgeon General C. Everett Koop in Washington in 1985.

In 1999, the Spectrum team worked with actor/comic/MS patient David Lander and the National Multiple Sclerosis Society.

John and his wife, Christine, celebrate at Spectrum’s 15th anniversary holiday party at the Fillmore Silver Spring (Maryland).

Spectrum’s new, creative office space opens in 2012 at 20th and Pennsylvania Avenues.

Fast forward to the present: All eyes in the scientific community will be on the U.S. Supreme Court on Monday, when the justices will consider a question that poses huge consequences for research and innovation, and immeasurable reward for scientific discoveries.

In Association for Molecular Pathology v. Myriad Genetics, the Court will ultimately determine whether human genes can be patented.

Genomics has transformed how cancer is diagnosed and treated. The DNA from a patient’s tumor can reveal specific information about its genetic makeup, pointing to the aggressiveness of the cancer and how best to treat it. Research has led to the identification of genes associated with all types of cancer, and the development of tests to find them.

In the case of the BRCA1 and BRCA2 genes, women with inherited mutations of these genes face very high risk for developing breast and ovarian cancer. Myriad Genetics sequenced BRCA1 and BRCA and since 1990, the company has held patents on them and the diagnostic tests to locate them, giving Myriad the exclusive right to examine any isolated human DNA that contains these genes.

In 2009, the American Civil Liberties Union and the Public Patent Foundation filed suit in Federal District Court seeking to overturn the patents on the DNA from BRCA1 and BRCA2. The plaintiffs contended that the DNA in these genes, and all human DNA, should not be eligible for patents, and that Myriad’s enforcement of patents impedes research, and even patients’ ability to know their own risks.

Medical and biomedical associations as well as patient groups joined the plaintiffs in friend-of-the-court briefs, opposing the patents and likening the patenting of human genes to patenting a product of nature.

Myriad responded that the DNA extracted from the BRCA1 and BRCA2 genes is patent-eligible because the process of isolating it renders it different from the DNA in the body. The company said denying patent protection could stifle innovation at Myriad and at other companies. The case has moved between the Federal District Court, the Court of Appeals in Washington and the Supreme Court, with the most recent ruling by the Court of Appeals on August 16, 2012 finding that Myriad’s diagnostic methods could not be patented, but the isolated forms of BRCA DNA are indeed patent-eligible.

The plaintiffs asked the Supreme Court to review the August decision and on Monday the justices will consider the appeal, focusing on the following question in oral arguments:

Are human genes patentable?

The U.S. Patent and Trademark Office began issuing patents on DNA in the 1980s, and in 2001 it issued guidelines to clarify the criteria for being awarded a patent. It has been estimated that 20 percent of the approximately 30,000 human genes have been patented.

In dozens of amicus briefs filed with the court, individuals and third-party groups lay out their arguments in support of each side. A collection of organizations, including the American Medical Association, American Society of Human Genetics and the American Osteopathic Association, calls for the patents to be voided, saying, “Patents on human genes interfere with health care professionals’ ability to provide appropriate care to their patients. These patents inhibit, rather than encourage, scientific research and technological innovation. These adverse effects could and should have been avoided because human genes are not patentable subject matter.”

On the other side, the Pharmaceutical Researchers and Manufacturers of America (PhRMA) supports upholding the patents, and in its brief points out the “critical distinction” between human genes in the body and isolated DNA molecules. “‘Isolated’ genes result from human intervention and ingenuity and thus are patent-eligible,” PhRMA said. The organization noted that patent exclusivity introduces a degree of certainty and predictability in the risky process of developing new medicines and technologies, and guides the investment decisions that fund discoveries.

Both sides of the case claim a decision in their favor will ensure more discoveries, leading to improved patient outcomes and making personalized medicine a reality for more people. And all agree the decision will be felt by the scientific research and medical community in many fields, as a finding concerning the patent-eligibility of isolated DNA could affect patents of other molecules derived from natural sources.

Whatever the outcome, how will Association for Molecular Pathology v. Myriad Genetics be mentioned, debated, taught, referenced or even remembered years from now?

The big trend to look out for in 2013: Digital will start to eat TV. We are living in an increasingly four-screen world (phone, tablet, PC and TV) and people are choosing to spend more of their time online either with TV or in place of TV. That is something that I don’t think is fully understood from a media mix and planning perspective.

 -    Jim Lefevere, Director, Global Digital Marketing
Roche Diagnostics (read more in the 2013 March edition of PM 360)

The Society for Women’s Health Research (SWHR) couldn’t have chosen a timelier theme for its upcoming Gala Dinner than “IMAGINE IT.” The IT, of course, stands for Information Technology. Technology is increasingly impacting health care, and on April 29, the Gala will focus on mobile health technology, innovations in women’s health and future technologies to improve patient care.

This year’s SWHR Gala will attract more than 600 representatives of diverse groups from key government health agencies to elected officials and members of the health industry, public health, patient advocacy and media. (It’s THE not-to-be-missed health/science affairs “mixer” in Washington.) Funds raised through the event are directed to public education campaigns, science programs and ongoing activities that support the SWHR mission.

Also, the eighth annual $75,000 SWHR-Medtronic Prize for Scientific Contributions will be awarded to a mid-level scientist for her research on sex differences.

From SWHR Annual Gala, May 2012. Left to Right: Story Landis, PhD, NIH/NINDS; Secretary Kathleen Sebelius, HHS; Patricia Grady, PhD, RN, FAAN, NIH/NINR; Phyllis Greenberger, MSW, SWHR President & CEO

SWHR has moved women’s health and biological differences to the forefront of medical research and policy. Participation in the Gala Dinner directly funds programs in science, advocacy and education to advance women’s health. (I serve on the SWHR board of directors.)

I hope to see you there!