Disease Awareness

Seng becomes the first non-physician bestowed with the SAM Award for contributions to advance the understanding and treatment of Progeria, an ultra-rare rapid ageing condition

BOSTON (April 30, 2018) – GLOBALHealthPR, the world’s largest partnership of independent health and life-science communications agencies, today announced its co-founder and chair, John J. Seng, has been awarded the 2018 SAM (Science And Medicine) Award by The Progeria Research Foundation (PRF). Seng received the honor for his contributions towards finding the cause, treatment and cure for children with Progeria, a rare, fatal genetic condition of accelerated ageing in children. Seng accepted the recognition on Saturday, April 28, at PRF’s Night of Wonder bi-annual gala in Boston.

Seng is the founder of GLOBALHealthPR, as well as Spectrum Science Communications, a leading health and science public relations agency in the United States. Long considered an influential leader in the healthcare communications landscape, Seng’s vision has remained consistent since day one: to lead an agency focused solely on health and science communications, affording the freedom to put clients first and empowering employees to do their best work, all to the benefit of the patients.

“John has been an amazing friend to PRF, Sam and all children with Progeria worldwide,” said Leslie Gordon, Co-Founder and Medical Director of The Progeria Research Foundation. “For the past 15 years, John has been instrumental in advancing PRF’s mission to discover treatments and the cure for Progeria. The efforts of Spectrum and GLOBALHealthPR have helped us tell the stories of our scientific progress, raise money for research and identify patients in all corners of the world living with this incredibly rare disease. We’re proud to call John a tremendous partner and to acknowledge his remarkable leadership, passion and commitment as we present him with the SAM Award in recognition of the many lives, past, present and future, that he and his teams have touched.”

John and Spectrum, along with the GLOBALHealthPR partners, have been involved in spreading the news throughout the world for every major announcement of PRF’s progress, from the discovery of the Progeria gene in 2003 to the premier of HBO’s “Life According to Sam,” which tells the remarkable story of Sam Berns.

In 2009, experts estimated that as many as 200 children were living with Progeria worldwide at any given time, yet only 50 were identified and known to PRF. With this in mind, Seng led GLOBALHealthPR in spearheading the Find the Other 150 campaign in collaboration with PRF. Network partners embarked on a proactive, international campaign using traditional and social media to educate communities on Progeria and its symptoms, with the goal of leaving no child undiagnosed. The campaign has been overwhelmingly successful, helping PRF to identify children throughout the world. These newly identified children move on to enroll in the PRF International Registry, Diagnostics Program and  PRF-funded clinical treatment trials, all to advance the understanding and treatment of Progeria.

“On behalf of my colleagues at Spectrum and GLOBALHealthPR worldwide, I’m incredibly humbled to accept this award and to have had the opportunity to help make a difference in Progeria research,” said Seng. “The hope and optimism shown by children with Progeria, their families and PRF inspire me and the legions of colleagues who stand with me in the commitment to find a cure,” said Seng.

Prior to 2018, the SAM Award had been given only twice in seven years. The first recipient was Dr. Francis Collins, Director of the National Institutes of Health, who led the discovery of the gene that causes Progeria; the second was Dr. Monica E. Kleinman of Boston Children’s Hospital, the Co-Chair of the Progeria clinical drug trials.

About GLOBALHealthPR^®

GLOBALHealthPR is a partnership of independently owned and operated health and science communications agencies that choose to work together based on common values. With more than 600 health-specialist communications professionals, researchers and medical advisors on staff serving more than 200 organizations globally, the agencies that make up the partnership share a belief in insights-driven strategies and a commitment to collaboration in order to provide clients the best possible counsel and execution. GLOBALHealthPR’s presence spans more than 40 countries covering Europe, North America, Latin America, the Middle East, Africa and the Asia-Pacific regions. For more information, visit www.globalhealthpr.com or follow us on Twitter: @GLOBALHealthPR.

MEDIA CONTACT:

Amir Khan

akhan@spectrumscience.com

+1 212-899-9730

For most individuals, the prescriber-patient relationship ends when the prescriber rips off a paper with the patient’s written prescription. As a patient, the moment you see the bottom of your prescription bottle, you know it’s time to take a trip down to the pharmacy to restock the pills. Weeks, months, and even years have passed by and you’re in a cycle of refilling your prescription, with poor communication between you and your prescriber. You may not feel the necessity to call up your prescriber because you feel fine, right? If you don’t experience life-threatening side effects, you must think you’re doing ok.

However, patients can still experience minor impairments in their daily activities that they do not notice or think to mention, which can cause severe health risks in the long-run. In the last 5 years, inappropriate use of pharmaceuticals has dramatically increased. And often, the misuse of prescription drugs tracks back to lack of communication between a patient and prescriber. What are some ways can we prevent prescription misuse, leading to health problems and even death?

Look beyond the prescriber

In an interview with Michelle Gross, Managing Director of Spectrum Science Communications New York Office, I asked for her opinion on whether or not she believes prescribers provide their patients sufficient warning about hazardous interactions between their prescription and OTC medicines or drug and alcohol use. “Patients don’t get enough information about the medicine they are taking and the conditions they have…they need to look beyond the prescriber for ways they could get that information” says Michelle, referring to the fact that prescribers don’t have the time to inform every single one of their patients about the details of each prescription.

Michelle suggested the solution may lie in the prescriber’s care team, like a nurse or a physician’s assistant. Patients could use them as the primary point-of-contact when they have a question about their prescription. Maintaining contact once and a while with a healthcare professional could enhance their knowledge about the drugs they take and provide the opportunity to learn how to prevent misuse.

A potential website portal or app

We use smartphones to connect ourselves with our loved-ones through social media platforms, emailing, and instant messaging. Smartphones and mobile devices have become so deeply ingrained in our social lives, it is hard to imagine what we would do without them.

Michelle asked, “Is there an online google-type resource that could be created where patients could check to get an alert every time their medicine changes? We have the technology to do that, there’s no reason why something like that couldn’t be created.” It doesn’t seem realistic for a physician to be responsible to hold every single one of their patient’s hand and guide them towards their medication process.  If a website portal or an app was created for patients to track their prescription, it could potentially decrease prescription misuse and fit seamlessly into their daily routine.

Inform to enhance

Patients and prescribers are busy with their own lives. Neither have time to constantly look out for their
prescriptions or remind one another about important information. However, there is a burden of responsibility on the prescribers, as they are the experts, to properly inform the patient of both the benefits and the risks of taking a drug; this description has to be comprehensive, prescription misuse happens (more often) when patients don’t have the information they need.  Michelle suggests this burden also extends to patients to be open about their personal lives and to update their prescriber on how a particular medication regime is affecting them. Their past challenges, like a drug or alcohol problems, or a family history of adverse reactions to some medications is crucial information for the prescriber when explaining to the patient the benefits and risk factors of a prescription.

Repair our habits

Imagine waking up one morning to a notification from a drug tracker app on your phone informing you that Tylenol can give you severe adverse reactions when taken with your prescribed ADD medicine. You would immediately avoid Tylenol and find an alternate OTC pain reliever to take.  The amount of lives saved would significantly increase if we had the tool to be notified each time our prescription is modified. Prescribers can be more active in encouraging their patients to be responsible and informed about the status and risks of their prescriptions. To prevent incidents of prescription drug misuse, as patients, we must do our parts to responsibly monitor our health while taking prescription medicine and keep our doctors in the loop. By building stronger relationships with our prescribers, we can repair habits of poor communication with one another and properly provide important information about the prescribed medicine and, slowly, but surely, begin to see less prescription misuse.

About the Author:

Fabiana Cuellar is a Public Relations Intern at GLOBALHealthPR

At GLOBALHealthPR, we are proud to announce our official support for World Hepatitis Day, July 28, 2016, joining a plethora of organisations fighting to ELIMINATE chronic Hepatitis C. World Hepatitis Day unites people from all walks of life to raise awareness of the substantial global burden of viral hepatitis and to provoke real change in disease prevention, testing and treatment options. The theme for this year’s World Hepatitis Day is ELIMINATION.

Watch the campaign video here.

What is Hepatitis C?

Chronic Hepatitis C virus (HCV) is a major global health issue affecting approximately 170 million people worldwide. If left untreated, HCV can progress to cirrhosis (scarring of the liver), liver cancer and liver failure.

HCV is a silent disease – an alarming 95% of people living with viral hepatitis are unaware they have the disease. In May 2016, World Health Organization (WHO) member States that attended the World Health Assembly, Geneva, Switzerland, committed to ELIMINATING viral hepatitis by 2030. The WHO Global Health Sector Strategy (2016-2021) on viral hepatitis aims to reduce the annual death rate from chronic hepatitis from 1.4 million to less than 0.5 million by 2030.

World Hepatitis Day (July 28, 2016) provides an important reminder for families and communities to talk about viral hepatitis and ensure we turn the tide on Hepatitis B and Hepatitis C.

According to Raquel Peck, CEO of the World Hepatitis Alliance, London, UK, “We are at a turning point for viral hepatitis. We have the tools; we have the commitment; what we need now is action. “We are asking all stakeholders to join us in celebrating the launch of NOhep on World Hepatitis Day, to help eliminate viral hepatitis – an illness that affects 400 million people worldwide.”

#Nohep

Nohep is a global World Hepatitis Alliance movement that aims to unite the hepatitis community and broader public to take action and call upon governments to ensure global commitments are met by 2030.

WHY Nohep?

1. Nohep… is RIGHT

4,000 deaths per day is 4,000 too many. Join Nohep… for greater access to life-saving medicines and vaccines

2. Nohep… is SMART

Eliminating hepatitis C will pay for itself by 2030. Join Nohep… to ensure governments make smart investments

3. Nohep … is FOR ALL

Viral hepatitis stigma stops people working, learning and having relationships. Join Nohep… to end stigma and stop discrimination

4. Nohep… OUR NEXT GREATEST ACHIEVEMENT

Taking action now will save 7 million lives by 2030. Join Nohep… to make the elimination of viral hepatitis our next greatest achievement.

HOW?

1. VACCINATE for Nohep

300,000 cancer deaths a year can be prevented. Join Nohep… for universal vaccination coverage.

2. TEST for Nohep…

95 per cent of people living with viral hepatitis don’t know they are living with the disease. Join Nohep… for increased testing among those at-risk.

3. TREAT for Nohep…

4,000 people die each day, yet life-saving medicines exist. Join Nohep… for greater access to life-saving treatments.

How can you support World Hepatitis Day?

Great strides have already been made, but so much more can be done to ensure 2016 is the beginning of the end of viral hepatitis. 

To pledge your support to ELIMINATE viral hepatitis:

1. Sign up to eliminate viral hepatitis by 2030 at http://www.nohep.org/.
2. Share photos from your events to show the world how you are contributing to the ELIMINATION of viral hepatitis. Upload your photos to http://worldhepatitisday.org/en/gallery or tweet your pictures using #World HepDay.
3. Sign up to the Nohep Thunderclap before 9:00 am ET at https://www.thunderclap.it/projects/43213-nohep-eliminate-hepatitis to share the following message on your elected social media channels.

This post comes to us courtesy of our Australian partners, VIVA! Communications. 

At the height of the AIDS crisis in the early 1990’s, approximately 1,000 Australians died from the disease each year. Since the mid-1990s and the advent of anti-retroviral medication, Australia has witnessed a dramatic reduction in AIDS cases. On July 10, 2016, prominent researchers from the Kirby and Peter Doherty Institutes and the Australian Federation of AIDS Organisations (AFAO) announced the end of AIDS as a public health issue.

Australia joins a handful of countries that have successfully fought the epidemic. Professor Andrew Grulich, head of the HIV Epidemiology and Prevention Program at the Kirby Institute, UNSW, Sydney, said the number of AIDS cases were so low that they were no longer monitored.

“These days we don’t even monitor it. It’s a transitory thing for most people; people have AIDS, then they go on treatment, and they don’t have AIDS anymore,” Professor Grulich told ABC News.

 

What is AIDS and how is it treated?

AIDS is an advanced stage of HIV infection that occurs when the body’s immune system can no longer fight off infections and illnesses. The syndrome leads to a severe decline in the body’s cellular immunity, which in turn, lowers resistance to infection and malignancy.

Since 1982, more than 35,000 Australians have been diagnosed with HIV, 10,000 of whom have died from AIDS-related illnesses. However, since the introduction of modern antiretroviral treatment (ART), the majority of individuals living with HIV, are unlikely to ever develop AIDS. ART is a life-long treatment regimen used to supress HIV within a person’s body. If ART is stopped, HIV can multiply and damage the immune system, heightening the risk of infections and cancer, and increasing the likelihood of virus transmission.

Of the estimated 88 per cent of Australians living with HIV who were diagnosed at the end of 2014, approximately 73 per cent were receiving ART, with therapy successfully managing the infection in 92 per cent of cases. The end of AIDS as a public health issue in Australia is testimony to the vigorous efforts and combined actions of communities of gay men, sex workers, people living with HIV, clinicians, public health professionals and researchers. Since the 1980’s, Australia has embarked on a series of elaborate, community-driven and clinical responses to the prevention and treatment of HIV AIDS.

HIV remains a public health issue

Researchers however, have been quick to reiterate, that in spite of the nation’s achievements, HIV remains a substantial public health problem in Australia. Currently, there are more than 27,000 Australians living with HIV, with 1,000 new cases of HIV recorded locally each year.

“One of the problems we still have in Australia is people not getting tested, not knowing they’re infected with HIV, and turning up for their first test when they already have AIDS, or already have significant immune damage,” Prof Sharon Lewin, Director of the Peter Doherty Institute, Melbourne, told ABC News.

The majority of HIV infections continue to occur in homosexual men, in addition to an increased incidence of HIV among Indigenous Australians and migrant communities. It is imperative Australia takes full advantage of the latest developments in the HIV prevention space, namely, the introduction of new, bio-medical prevention technologies, such as pre-exposure prophylaxis. Historically, HIV has been tarred by a lack of public understanding and stigma, largely due to the negative imagery and connotations associated with AIDS and AIDS-related illnesses.

Global battle to beat AIDS is far from over

Globally, more than 35 million people are living with HIV, the majority of whom reside in countries where ART is neither easily accessible, nor affordable

Researchers at the Kirby and Peter Doherty institutes, along with the AFAO, utilised the recent announcement to call upon the Australian government to increase funds into the Global Fund to beat HIV in the Asia-Pacific, a region where more than 200,000 people die from AIDS-related illnesses each year.

Australia has previously committed $200 million to the Global Fund, an initiative established to channel funds and resources into countries most susceptible to HIV and AIDS. Don Baxter, an international officer at the AFAO, has stated that in spite of the recent victory, it is imperative that Australia continues to assist countries which have not yet tackled the AIDS epidemic.

“We are seeing very few countries actually reducing that rate of infection at this stage, and we don’t see the political will of those governments as we’ve had in Australia,” Don Baxter told ABC News.

Ultimately, Australia’s success in combating the AIDS epidemic signals to international leaders, that a world without AIDS is possible.

From May 23rd to May 28th, 3,500 delegates from the WHO’s 194 Member States, including a large proportion of the world’s health ministers, converged on Geneva for the 69th World Health Assembly to discuss the globe’s most essential health topics. The events generated coverage in more than 200 media outlets, 80,000 social mentions totaling 1.5 billion impressions using hashtag #WHA69.

Here are the key takeaways that GLOBALHealthPR partners and many of our clients will be keeping an eye on as we enter the second half of 2016:

1. The Health Emergencies Programme: What You Need to Know

World Health Organization member states agreed to one of the most profound transformations in the WHO’s history, establishing a new  Health Emergencies Programme. As countries face or recover from epidemics such as Zika and Ebola, as well as other threats such as natural disasters, this programme aims to distribute rapid, predictable and comprehensive support.

According to the WHO’s press release, the programme will require a budget of $494 million for the 2016-2017 year, a $160 million increase to the existing budget. In order to track the progress made throughout the year, the WHO Director-General was tasked to report to the 70th World Health Assembly on the programme’s establishment and operation.

Analysis: The WHO has clearly laid out the need and costs involved in bringing such a timely and appropriate programme to life. What remains unclear is what return on investment this will have. An appropriate next step would be a clearly communicated of an action plan (beyond just reporting back at next year’s assembly) to bring the programme to life and an explicit outline of its ROI to pull through the value story.

2. The 2030 Agenda for Sustainable Development

Dr. Chan also highlighted the importance of the 2030 Agenda for Sustainable Development Goals (SDG), the UN’s post-2015 successor to the Millennium Development Goals.

How do WHO delegates plan to pursue these goals? At the meeting, leaders laid out the following steps:

• Highlight universal health coverage
• Report economic, environmental, and social causes of health problems.
• Continue expanding efforts to address poor maternal and child health and infectious diseases in developing countries

Dr. Chan informed members that health has a crucial role in the new SDG agenda, and that universal health coverage is an effective approach to achieving health related targets.

Analysis: The pharmaceutical industry, often seen as an obstruction is beginning to catch on and take a more meaningful role in reaching these goals. Industry is realizing the need to also communicate with the public about its involvement. For example, the International Federation of Pharmaceutical Manufacturers Associations (IFPMA) has prominently featured the SDGs as a key topic on its new website, and highlighted over  250 partnerships in sustainable development with industry member companies

3. Childhood Obesity

Dr. Chen emphasized the dangers of junk food saying, “the marketing of junk food – particularly to children – has become a global phenomenon.” For example, in Australia, 58 percent of the average household’s food budget is spent on junk food. Additionally, The WHO informed attendees that worldwide today, 19,000 fewer children are dying every day and there’s been a 44 percent decrease in maternal mortality—a huge success. However, key challenges persist:

• 1.9 billion children are overweight
• 462 million children are underweight
• 2 billion children are deficient in essential nutrition

Despite the substantial improvement, the delegates at the WHA agreed to implement two new health strategies linked to the Sustainable Development Goals. The first, The Global Strategy for Women’s, Children’s and Adolescents’ Health, builds a safeguard for women, children, and adolescents globally, to “survive and thrive” by 2030. This is an update to the 2010 Strategy that WHO has currently implemented. Their intention is to inspire political leaders and policy-makers to improve the health and lifestyles of women, children and adolescents as well as encouraging positive changes.

Analysis: Since 2012, GLOBALHealthPR has spotlighted the lack of discussion around childhood obesity, and identified the opportunity to improve dialogues through digital conversations. It was refreshing to see this trend discussed openly at WHA this year. Now the focus shifts to Dr. Chan’s sharp comments about junk food. How will multinational food industry players respond and collaborate for solutions?

The role of communicators

Communications professionals who routinely serve clients in the pharmaceutical, biotech and consumer science industries should keep a finger on the pulse of what the global public health community is saying and doing. They also need to seek opportunities to share stories about the ways in which industry is working collectively to tackle these key health issues.

For in-house communications officials and marketers, building a dialogue with the public health community encourages awareness and provides the chance to bridge the gap between the public’s often negative perception of industry and the reality that the private sector can be a collaborative and action-oriented partner for global good.

Question: How else can we as communicators reinforce WHO’s efforts in spreading awareness of the key health challenges highlighted at the World Health Assembly?

 

About the Author:

Fabiana Cuellar is a Public Relations Intern at GLOBALHealthPR