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by ghmc
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
+1 212-899-9730
This month GLOBALHealthPR welcomed F/NE Group as our newest partner in South Africa and the broader region. In this infographic, see how communications can help address some of the most urgent healthcare challenges across the continent.
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?
- Nohep… is RIGHT
4,000 deaths per day is 4,000 too many. Join Nohep… for greater access to life-saving medicines and vaccines
- Nohep… is SMART
Eliminating hepatitis C will pay for itself by 2030. Join Nohep… to ensure governments make smart investments
- Nohep … is FOR ALL
Viral hepatitis stigma stops people working, learning and having relationships. Join Nohep… to end stigma and stop discrimination
- 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?
- VACCINATE for Nohep
300,000 cancer deaths a year can be prevented. Join Nohep… for universal vaccination coverage.
- 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.
- 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:
- Sign up to eliminate viral hepatitis by 2030 at http://www.nohep.org/.
- 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.
- 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.