Latest news with #GHLF
Yahoo
21-05-2025
- Health
- Yahoo
Global Healthy Living Foundation and GoodTe. Inc. Rank Japanese vs. English Speaking Respondents In A Small Global Inflammatory Bowel Disease Study
Japanese-Language Patients Are Diagnosed Nearly Twice As Often Within One Year and Trust Physicians Twice As Often As English-Language Respondents NYACK, N.Y., May 21, 2025--(BUSINESS WIRE)--A small dual-language Japanese and English survey of 203 patients from 13 countries showed 56 percent of Japanese respondents with IBD were diagnosed within a year of symptom onset vs. 33 percent of those answering in English. The study was jointly conducted by an online IBD patient community, G-Community, a part of GoodTe. Inc., Chiyoda-ku, Tokyo, and the Global Healthy Living Foundation (GHLF) using self-selected participants from online communities and social media. It was designed to informally compare Japanese language respondents to those answering in English. "Despite its small size and informal nature, this survey is noteworthy because of the disparity in some responses that positively highlight the Japanese IBD experience, including a comparatively short time to diagnosis," Aya Fujiwara, Japan Lead at the Global Living Foundation says. Conversely, the debilitating effects of inflammatory bowel disease at work and in school were equally present in patients from in both surveyed languages. Fifty-Eight percent of Japanese language respondents and 63 percent of English language respondents reported interference with school while 90 percent of those answering in Japanese and 87 percent in English indicated significant work impact. "This speaks to the uniform global disease burden of IBD, even after diagnosis," Ms. Fujiwara, added. In addition, although many Japanese-language respondents were diagnosed within one year, about 21 percent still experienced a delay of over five years—similar to the 25 percent of English-language respondents who faced the same delay. "We can only assume, from some of the free-form responses that the delayed diagnosis came from those without access to specialists, a difficulty recognizing symptoms, or people without a medical home," Ms. Fujiwara said. "We need to refine these rough findings with additional research." Japanese respondents showed strong trust in their healthcare providers, with 48 percent of Japanese-language respondents expressing trust—more than twice the rate of English-language respondents (21%). Survey Details Conducted by: GoodTe. Inc., Chiyoda-ku, Tokyo (Japanese language) and GHLF (English language) Survey Dates: Japan: May 8–12, 2025 Rest of World: May 7–11, 2025 Respondents: People diagnosed with IBD Method: GoodTe. Inc. /GHLF online communities and social media (Instagram, X) Total survey respondents: 203 Japanese language respondents: 52 (26%) English language respondents: 151 (74%) About GHLF A global nonprofit founded in 1999, representing patients with chronic disease through education, advocacy, research, and patient support.- GHLF Japanese language IBD page: - GHLF English language website: - Japanese language podcasts and information. Japanese language: Living with IBD—Education and Employment: About GoodTe. Inc. and G Community: GoodTe was founded in 2018 and its IBD patient group, G Community, began July 2019, has over 3,100 members. Members have access to: GoodTe Recipe, a collection of IBD-friendly recipes, and Gentle Bites, a gut-friendly snack supported by the Meiji Accelerator program. Japanese- G Community Japanese language IBD site: - GoodTe Recipe Japanese language cooking site: - Gentle Bites Shop Japanese language IBD-friendly snacks: About Inflammatory Bowel Disease: IBD is a chronic inflammatory condition affecting intestinal mucosa. Symptoms include abdominal pain, diarrhea, and bloody stool. Its cause is unknown and IBD, affecting nearly 300,000 Japanese people, is designated as an intractable disease by Japan's Ministry of Health. View source version on Contacts GoodTe. Miyazaki, Noriyuki SuzukiEmail: info@ GHLFLouis TharpLTHARP@ 845-323-8408
Business Wire
21-05-2025
- Health
- Business Wire
Global Healthy Living Foundation and GoodTe. Inc. Rank Japanese vs. English Speaking Respondents In A Small Global Inflammatory Bowel Disease Study
BUSINESS WIRE)--A small dual-language Japanese and English survey of 203 patients from 13 countries showed 56 percent of Japanese respondents with IBD were diagnosed within a year of symptom onset vs. 33 percent of those answering in English. The study was jointly conducted by an online IBD patient community, G-Community, a part of GoodTe. Inc., Chiyoda-ku, Tokyo, and the Global Healthy Living Foundation (GHLF) using self-selected participants from online communities and social media. It was designed to informally compare Japanese language respondents to those answering in English. "Despite its small size and informal nature, this survey positively highlights the Japanese IBD experience, including a comparatively short time to diagnosis." Share 'Despite its small size and informal nature, this survey is noteworthy because of the disparity in some responses that positively highlight the Japanese IBD experience, including a comparatively short time to diagnosis,' Aya Fujiwara, Japan Lead at the Global Living Foundation says. Conversely, the debilitating effects of inflammatory bowel disease at work and in school were equally present in patients from in both surveyed languages. Fifty-Eight percent of Japanese language respondents and 63 percent of English language respondents reported interference with school while 90 percent of those answering in Japanese and 87 percent in English indicated significant work impact. 'This speaks to the uniform global disease burden of IBD, even after diagnosis,' Ms. Fujiwara, added. In addition, although many Japanese-language respondents were diagnosed within one year, about 21 percent still experienced a delay of over five years—similar to the 25 percent of English-language respondents who faced the same delay. 'We can only assume, from some of the free-form responses that the delayed diagnosis came from those without access to specialists, a difficulty recognizing symptoms, or people without a medical home,' Ms. Fujiwara said. 'We need to refine these rough findings with additional research.' Japanese respondents showed strong trust in their healthcare providers, with 48 percent of Japanese-language respondents expressing trust—more than twice the rate of English-language respondents (21%). Survey Details Conducted by: GoodTe. Inc., Chiyoda-ku, Tokyo (Japanese language) and GHLF (English language) Survey Dates: Japan: May 8–12, 2025 Rest of World: May 7–11, 2025 Respondents: People diagnosed with IBD Method: GoodTe. Inc. /GHLF online communities and social media (Instagram, X) Total survey respondents: 203 Japanese language respondents: 52 (26%) English language respondents: 151 (74%) About GHLF A global nonprofit founded in 1999, representing patients with chronic disease through education, advocacy, research, and patient support. - GHLF Japanese language IBD page: - GHLF English language website: - Japanese language podcasts and information. Japanese language: Living with IBD—Education and Employment: About GoodTe. Inc. and G Community: GoodTe was founded in 2018 and its IBD patient group, G Community, began July 2019, has over 3,100 members. Members have access to: GoodTe Recipe, a collection of IBD-friendly recipes, and Gentle Bites, a gut-friendly snack supported by the Meiji Accelerator program. Japanese - G Community Japanese language IBD site: - GoodTe Recipe Japanese language cooking site: - Gentle Bites Shop Japanese language IBD-friendly snacks: About Inflammatory Bowel Disease: IBD is a chronic inflammatory condition affecting intestinal mucosa. Symptoms include abdominal pain, diarrhea, and bloody stool. Its cause is unknown and IBD, affecting nearly 300,000 Japanese people, is designated as an intractable disease by Japan's Ministry of Health.
Business Wire
12-05-2025
- Health
- Business Wire
Global Healthy Living Foundation Takes National 340B Reform and Transparency Briefing To New York
UPPER NYACK, N.Y.--(BUSINESS WIRE)--Steven Newmark, Chief Legal and Policy Officer of the Global Healthy Living Foundation (GHLF), takes the organization's national 340B reform message to a policy briefing in Albany, NY, on May 13, addressing the national implications of unchecked expansion of the federal 340B Drug Pricing Program — a critical but increasingly controversial tool designed to support healthcare access for underserved populations. 'The 340B program is a lifeline when it works as intended — but without oversight, it risks becoming a loophole instead of a safety net.' Newmark will join lawmakers, academic experts, and fellow advocates to urge greater transparency and accountability in how hospitals and other healthcare institutions use the steep drug discounts they receive under 340B. While originally intended to help vulnerable patients afford essential medications, the program has come under scrutiny for allowing covered entities to pocket savings without passing them along to patients. 'The 340B program is a lifeline when it works as intended — but without oversight, it risks becoming a loophole instead of a safety net,' said Newmark. 'We need reform before expansion. Patients, not institutions, should be the primary beneficiaries.' As it has in other states, GHLF, a national nonprofit that advocates for people living with chronic illness, is raising concerns about proposed legislation in New York (S.1913 / A.7789) that would make it easier to expand 340B eligibility to additional entities without requiring clear patient benefit or public accountability. The Foundation has issued a memorandum in opposition, warning that such policies may incentivize profit-seeking behavior at the expense of patient care — a trend already observed across multiple states. The May 13 policy forum, co-hosted by Assemblymember Amanda Septimo and the Community Liver Alliance, comes amid growing national debate about the future of 340B. Lawmakers in Congress have also introduced bills to audit and modernize the program, reflecting a bipartisan understanding that reform is needed to preserve the program's original mission. Why It Matters Nationally More than $50 billion in drug discounts flow through 340B each year — yet little data exists on how those savings are used. Chronic disease patients, especially those with high drug costs, often see no direct community benefit. Without reform, analysts warn the program may undermine drug pricing systems and continue to erode public trust. 'This isn't just a New York issue. Every state should be asking: is 340B still doing what it was meant to do?' said Newmark. GHLF urges lawmakers nationwide to adopt transparency mandates, patient benefit requirements, and regular audits before allowing the program to expand further. About GHLF The Global Healthy Living Foundation is a U.S. based, 501(c)(3) nonprofit, international organization whose mission is to improve the quality of life for people with chronic illnesses by advocating for improved access to health care through education, patient-centered clinical research, support, advocacy, and economic and policy research. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the international, digital community for millions of people living with arthritis and their supporters worldwide who seek education, support, activism, and patient-centered research in English, Spanish, and French. In addition to arthritis and autoimmune disorders, GHLF supports dermatology, gastroenterology, neurology, cardiology, oncology, infectious disease, rare disease, and pulmonary patients through a host of different programs and activities which draw more than 700,000 patients a month to GHLF websites and create more than 10 million impressions a month on seven social media platforms. In 2024, GHLF had more than 1 million views and listens with its patient-centered audio-visual content, found on YouTube and podcast platforms. GHLF never asks the public for donations, receiving funding instead through governments, non-governmental organizations, foundations, industry, family foundations, and GHLF Co-Founder Louis Tharp. Visit for more information.
Business Wire
07-05-2025
- Health
- Business Wire
Vaccines Still Matter – Global Healthy Living Foundation Sees Strong Patient Engagement Despite Current Negative Rhetoric
BUSINESS WIRE)--At a medical conference for vaccine professionals, Global Healthy Living Foundation (GHLF) social media posts, podcasts and YouTube videos had surprising uptake among chronically ill patients, despite continuing anti-vaccine rhetoric from many media, individuals and government sources. ...Surprising uptake among chronically ill patients, despite continuing anti-vaccine rhetoric from many media, individuals and government sources. GHLF's coverage of the World Vaccine Congress, held in Washington, D.C. last week, reached more than 23,000 non-attendees and generated more than 800 engagements across platforms including LinkedIn, X, Instagram, Facebook, TikTok, and YouTube. A special video podcast episode of Healthcare Matters recorded at the conference and published on April 25 has so far garnered more than 4,900 views/listens and continues to climb. 'These aren't big numbers for consumer-oriented social media posts or podcasts,' said Robert Popovian, PharmD, MS, GHLF's Chief Science Policy Officer. 'But GHLF's digital output is organic, high-credibility and tailored to niche audiences of professionals, as well as individuals and caregivers with specific chronic diseases. It isn't necessarily relevant unless you have, or care for someone, with a very specific disease, so these are significant numbers in a short time frame,' he said. 'It signals to us that maintaining and protecting health in the face of a chronic illness is important to this audience. They want information about vaccines, and they understand the value of vaccinations in reaching their health goals,' Dr. Popovian added. 'Before the current drop in vaccination rates among the general public in some areas of the U.S., people with ongoing illnesses who were often immunocompromised, could rely on the overall community immunity to add an extra measure of protection against disease. This extra protection, afforded by healthy vaccinated individuals who felt a responsibility to their neighbors, isn't as prevalent today so we lose community immunity and diseases that were eradicated in the U.S. many years ago are returning,' Popovian added. 'What really struck me at the World Vaccine Congress was how aligned people were — from pharma leaders to advocates to policy folks — about the urgency of fighting misinformation and navigating funding shortfalls. Even with different perspectives, there was a real sense of unity and shared purpose, which left me hopeful about the road ahead, especially with new applications for mRNA vaccines,' Ben Blanc, MS, GHLF's Director of Digital Production and Engagement said. The Healthcare Matters podcast, which proved immediately popular among patients, was recorded live at the Congress and hosted by Dr. Popovian and Mr. Blanc. The episode featured vaccine experts, including: Richard Hughes, Partner at Epstein Becker & Green and Lecturer in Law at George Washington University Tommy Acciani, Director, U.S. Vaccine Policy, GSK Abby Bownas, Co-lead, Adult Vaccine Access Coalition Rekha Lakshmanan, Chief Strategic Officer, The Immunization Partnership The podcast explored the current landscape of adult immunization policy, funding threats to vaccine infrastructure, misinformation challenges, and what's next for vaccine innovation. For continued updates and to access GHLF's World Vaccine Congress content, visit: All interviews, as well as our special video episode, can be found here: About GHLF The Global Healthy Living Foundation is a U.S. based, 501(c)(3) nonprofit, international organization whose mission is to improve the quality of life for people with chronic illnesses by advocating for improved access to health care through education, patient-centered clinical research, support, advocacy, and economic and policy research. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the international, digital community for millions of people living with arthritis and their supporters worldwide who seek education, support, activism, and patient-centered research in English, Spanish, and French. In addition to arthritis and autoimmune disorders, GHLF supports dermatology, gastroenterology, neurology, cardiology, oncology, infectious disease, rare disease, and pulmonary patients through a host of different programs and activities which draw more than 700,000 patients a month to GHLF websites and create more than 10 million impressions a month on seven social media platforms. In 2024, GHLF had more than 1 million views and listens with its patient-centered audio-visual content, found on YouTube and podcast platforms. GHLF never asks the public for donations, receiving funding instead through governments, non-governmental organizations, foundations, industry, family foundations, and GHLF Co-Founder Louis Tharp. Visit for more information.
