Hepatitis B Foundation

The Hepatitis B Foundation (HBF) is a national nonprofit organization dedicated to finding a cure for hepatitis B and improving the lives of those already affected by the disease. Established in 1991, the foundation's headquarters is in Doylestown, PA.[1] It is the only non-profit in the United States focused solely on hepatitis B.[2] The foundation conducts biomedical research, promotes disease awareness, and acts as an information source for patients, the medical community, and the general public.[3] The Hepatitis B Foundation's research arm, the Baruch S. Blumberg Institute, has the largest number of non-profit scientists dedicated to hepatitis B research in the world.[4] The organization also leads national public policy initiatives and international public health programs.[5]

The Hepatitis B Foundation
AbbreviationHBF
Formation1991
FounderJoan and Tim Block
Typenon profit
Purposecure for hepatitis B

History and organization

History and founders

The Hepatitis B Foundation was established in 1991 by a young couple, Joan and Tim Block.[2] After Joan was diagnosed with hepatitis B at the age of 29, she and Tim encountered a lack of support and few resources to cope with the new diagnosis. To meet the unmet needs of those living with chronic hepatitis B, they created the Hepatitis B Foundation with the help of the other co-founders, Janine and Paul Witte. The first meetings of the foundation were held in their living room. Tim Block, a professor of virology at Thomas Jefferson University at the time, switched his research focus from herpesviridae to hepatitis B. He reached out to Baruch S. Blumberg, the Nobel prize winning discoverer of the hepatitis B virus, who invited Block to join him as a research fellow at Oxford University.[6][7] Blumberg ultimately became a founding member of the Hepatitis B Foundation's research arm.[6][7] Joan and Tim served in leadership roles throughout the growth of the organization. Joan Block served as Executive Director until retiring in 2017, while Tim Block remains as president of the foundation and its affiliated research arm, Baruch S. Blumberg Institute.[8][9]

Organization and operations

The Hepatitis B Foundation is a nonprofit organization that provides resources and information about hepatitis B, engages in public health outreach campaigns, and leads public policy initiatives. Their website acts as a resource for patients, the medical community, and general public to learn about the diagnosis and treatment of hepatitis B. Patient-centered support groups and trained counselors, who answer email and telephone questions, can be found on their website.[10][11] Their website is available in 12 different languages, including Chinese, Hindi, Korean, and Vietnamese. For the medical community, the Hepatitis B Foundation organizes the International HBV Scientific Meeting annually for scientists discuss to new discoveries in hepatitis B research.[12] The organization is also actively involved in policy-making, helping ensure hepatitis B is a health priority at the local and federal level.[13][14][15]

The Baruch S. Blumberg Institute was established in 2003 by the Hepatitis B Foundation to conduct focused biomedical research on hepatitis B. Originally known as the Institute of Hepatitis and Virus Research, it was renamed in 2013 to honor its late co-founder and discoverer of the hepatitis B virus, Baruch S. Blumberg.[16][17] The research institute contains the largest group of non-profit scientists in the United States working on hepatitis B research.[4] In 2006, the Hepatitis B Foundation opened its first research facility on Delaware Valley College's campus to house the Baruch S Blumberg Institute. This research facility was recognized by the state as a Pennsylvania Keystone Innovation Zone.[18][19][20] In 2006, the foundation built a research center to accommodate its expanding activities.[21] This new center, called the Pennsylvania Biotechnology Center, presently acts as the headquarters for the Hepatitis B Foundation and Baruch S. Blumberg Institute. The Hepatitis B Foundation's biotechnology center has created over 700 jobs and brought in more than $1.8 billion to the Bucks County economic region between 2013 and 2015.[22] In 2017, the foundation secured a $13 million grant to expand its Pennsylvania Biotechnology Center by 47,000 square feet, which will add 100 new jobs to its research facility.[23]

Accomplishments and awards

The Hepatitis B Foundation has been recognized at the national level on more than one occasion. Pennsylvania Representative Patrick J. Murphy dedicated a speech in front of the House of Representatives in 2007 stating the importance of the work being done by the foundation.[24] The foundation was also recognized for their efforts when they were one of the organizations invited to the White House for a historic event commemorating the first official World Hepatitis Day.[25]

Private institutions also recognize the efforts of the foundation and acknowledge its positive impact on the community. GlaxoSmithKline (GSK) selected the Hepatitis B Foundation as one of its winners of the 11th Annual IMPACT Award. The IMPACT awards are presented to local non-profits who demonstrate effectiveness, dedication, and significant impact on local communities. Joan Block accepted the award and the $40,000 grant money on behalf of the foundation.[26]

Programs offered by the Hepatitis B Foundation and the Blumberg Institute

Public health and outreach programs
Consult helpline The Consult helpline is a major part of the foundation's mission to alleviate the burden of disease on communities by providing easy access patient helplines.[11] These helplines allow the foundation to provide general hepatitis B information, treatment options, assistance with locating providers, and support for people who have been impacted by hepatitis B.[27] The primary helplines are available through email or phone numbers that are posted on the foundation's website; however, the foundation answers questions on any of their social media platforms.[11]
Hep B United Coalition Hep B United is a national coalition founded and co-chaired by the Hepatitis B Foundation, along with their partner AAPCHO (The Association of Asian Pacific Community Health Organizations), that seeks to leverage local and community coalitions. It partners with health departments, healthcare providers, political leaders, and others to increase awareness and intervention against hepatitis B.[2] Each local, independent coalition operates within their own area of operations: for example, the Hep B United Philadelphia chapter has over 60 coalition partners including the city's Department of Public Health, community organizations, healthcare providers, and more.[28]
#JustB Patient Storytelling Project The foundation uses the #JustB campaign to aggregate stories from patients with hepatitis B and uses these stories in campaigns to improve awareness and knowledge about hepatitis B.[29] The goal of this project is to reduce the stigma associated with the virus by placing a human face on the disease. These materials include a written story hosted on the foundation website as well as videos hosted on YouTube.[30]
Hepatitis Delta Connect Hepatitis Delta Connect is a program created to increase awareness of hepatitis D, a virus that has the potential to co-infect patients with hepatitis B infections. This program utilizes webinars and other online resources to provide training, information, and support to those affected.[31][32]
Liver Cancer Connect The Liver Cancer Connect program is a dedicated resource for helping families and individuals deal with a liver cancer diagnosis.[33]
National Patient Advocacy The foundation is involved in reducing the discrimination against individuals infected with hepatitis B and ensuring their rights are covered under the American Disability Act as a protected group. This was demonstrated by supporting a case against a New Jersey medical school that had rejected two candidates because they had hepatitis B.[15] Another aspect of the foundation's advocacy is making sure that policy-makers are aware of the challenges hepatitis B causes for individuals and communities. This advocacy has been featured on a national level in a White House webinar discussing stigma and discrimination associated with hepatitis B.[34] The foundation's advocacy efforts in Pennsylvania resulted in the state house and Senate officially designating May as Hepatitis Awareness Month; this was one of the first states in the U.S. to do so and many states have since followed PA's example.[35] The foundation has continually worked with local and national lawmakers and members of the foundation have testified multiple times before different Congressional Committees arguing for increased funding and presenting the multiple challenges that exist in dealing with this disease.[36][37][38][39]

Resources and support
Hep B Blog The Hepatitis B Foundation has operated a blog since April 2011 delivering posts at least weekly that talk about resources, treatment options, current state of hepatitis B research, and other topics that help promote informed discussions about the disease. The intended audience of the blog is primarily people who are at-risk or already infected by hepatitis B foundation and as such is written in a manner that is not information dense and easily accessible to the casual reader.[40]
Facts Sheets The foundation has developed a library of fact sheets in PDF format that are available for easy download and distribution. These fact sheets cover topics ranging from information about hepatitis B and its effect on the liver to information on vaccines and Hep B/D co-infection. These sheets are available in a variety of languages including Spanish, Russian, Chinese, Hindi, and more.[41] Several of these sheets were developed in conjunction and with the approval of the CDC and are currently hosted on the CDC's National Prevention Information website.[42][43]

Research at the Blumberg Institute
Research FocusesThe Baruch S. Blumberg Institute's research focuses are primarily on finding treatments and a cure for hepatitis B, but the information and research process by extension also included other forms of hepatitis as well as liver cancer. The researchers at the institute work towards this goal through drug development, liver disease/cancer early biomarker identification, and fostering biotechnology advancement by offering the institute's resources to start-up firms in an effort to bring commercial and non-profit scientific collaboration under the same roof.[44][45]
Notable citations and accomplishmentsThe institute is one of the first research groups to identify a molecule capable of inhibiting cccDNC formation in the hepatitis B virus. The institute believes that this is a key element in developing a cure.[46] The institute has hosted visits from multiple U.S. politicians who wish to know more about hepatitis B and associated research.[47]
Any patents created by Blumberg researchersIn 2015, the institute licensed several of its discoveries to Arbutus Biopharma. This partnership was part of an effort to move discoveries more quickly from the lab, to development, to prescription. The institute continues to want to encourage new start-ups and new ideas to grow from the discovery moment all the way to production in as little time as possible.[46][48] Companies and scientists working with the institute are not required to focus their research only on hepatitis B; in 2017 the FDA approved a drug that was developed at the research facility called Trulance, a drug designed to help people suffering from idiopathic constipation.[49]
International HBV MeetingThe Blumberg Institute, in conjunction with the Hepatitis B Foundation, coordinates an annual meeting that is the singular meeting that brings together the international scientific community dedicated solely towards making an impact on the hepatitis B and hepatitis D viruses. It especially distinguishes itself because presentations are delivered on in-progress efforts, allowing attendees to see exclusively unpublished works. Past locations for the meeting include Italy, the United States, South Korea, Germany, Canada, and others.[50][51]

Education and training
College Internship ProgramThe college internship program was established in 2000 and is a 10-week program that provides college juniors and seniors with a hands-on experience in research and scholarly activities.[52][53][54] Mentorship is provided and the internship culminates with the presentation of the students' projects to the faculty of the foundation. It is partially funded by a grant from the PA Department of Health.[55][56]
High school ProgramThe foundation offers a 2-week summer intensive program for high school juniors and seniors interested in learning about biotechnology, research, and public health as it relates to hepatitis B and liver cancer.[52] This program is funded in part by grants and donations from the PA Education Improvement Tax Credit as well as private donors.[57][58][59][56][60][61]
GCSOM MBS ProgramIn 2016, The Baruch S. Blumberg Institute partnered with the Geisinger Commonwealth School of Medicine to offer an on-site Master's of Biomedical Sciences degree. The first cohort of 13 individuals graduated from this program in August 2017.[62][63][64]
Philadelphia International Education Summer High School Research ProgramThe foundation partnered up with the Philadelphia International Education to offer a 6-week summer program to Chinese high school students ages 16–19 to provide them with hands-on experience in research labs under the direct supervision of professors and senior scientists.[65]

References
  1. "Terms of Service Violation". www.bloomberg.com.
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  3. "Mission & History » Hepatitis B Foundation". www.hepb.org.
  4. "Renowned Scientists Join Baruch S. Blumberg Institute To Cure Hepatitis B". 30 March 2015.
  5. "Hepatitis B group launches campaign". The Intelligencer. February 14, 2011. The Hepatitis B Foundation which is headquartered in Doylestown, is launching its Gateway to Care Public Health Campaign in Haimen City, China
  6. "Nobel Laureate joins Hepatitis B Foundation as a Distinguished Scholar". The Bucks County Herald. January 25, 2007. Nobel Laureate Baruch Blumberg has been named the first Hepatitis B Foundation Trustee Distinguished Scholar.
  7. "In the Cancer Centers". The Cancer Letter. 33 (4): 7. February 2, 2007.
  8. writer, Crissa Shoemaker DeBree, staff. "Search for hepatitis B cure a labor of love".
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  10. "Hepatitis B Foundation". Newtown Gazette. Times Publishing Newspapers Inc. February 12, 2012.
  11. "Hepatitis B Foundation". Doylestown Observer. Times Publishing Newspapers Inc. January 29, 2010. p. 2. Each year HBF's award-winning web site receives one million visits, trained counselors answer hundreds of email and telephone requests, their free publications provided the latest news and the annual meetings they sponsor are highly respected.
  12. "International HBV Meeting". International HBV Meeting. Hepatitis B Foundation. Retrieved 4 January 2019.
  13. Philips, K. (May 5, 2006). "Doylestown Celebration Dedicated to Hepatitis B Awareness". KYW NewsRadio. Archived from the original on May 5, 2006. Retrieved May 5, 2006. The first Friday celebration in Doylestown will educate local community leaders, educators, business owners, and residents that Hepatitis B is something that everyone needs to be aware of. There will be displays, discussions, and informative literature.
  14. "Lineup of music and art at First Friday Doylestown". Bucks County Herald. May 11, 2006.
  15. Debree, C. (August 18, 2013). "Honored for her disease advocacy". The Intelligencer. Earlier this year, the foundation's mission got a boost when the U.S. Department of Justice said hepatitis B patients are protected under federal disability law in a case brought by the foundation against a New Jersey medical school on behalf of two students who were denied admission because they had the disease.
  16. "PA Biotechnology Center to Begin $10 Million Expansion". 13 October 2016.
  17. "About Us - Baruch S. Blumberg Institute of Living Science". blumberginstitute.org.
  18. George, J. (September 1, 2006). "BioIncubator hatched to aid researchers, startups". Philadelphia Business Journal. More than five years after Dr. Timothy Block first conceived the idea for a building where researchers, students, and entrepreneurs would work and learn side by side, the $15 million Pennsylvania Biotechnology Center of Bucks Country is set to open next week in Buckingham. The 62,000 square-foot facility, which gets its official unveiling Sept. 7, was created through a Partnership between the hepatitis B foundation and the Delaware Valley College. The center... will serve as the foundations' new headquarters, a teaching site for college students from DelVal and Drexel University, and a place to nurture fledgling life sciences companies.
  19. Wilen, J. (September 7, 2006). "Biotech center nets $250,000". The Intelligencer. Bucks County's new biotechnology center opened to much fanfare Thursday morning, and additionally received a $250,000 state grant at the same time. The money came from the state department of Community and Economic Development, which designated the new 62,000 square foot biotechnology business incubator and research facility - and two other Bucks county sites - a Pennsylvania Keystone Innovation Zone.
  20. "Governor Rendel Launches Bucks County Innovation Zone; Announces $250,000 in Operational Funding". Office of the Governor Commonwealth of Pennsylvania. Governor's Press Office. September 7, 2016.
  21. Seller, DeBree (1 November 2015). "Pennsylvania Biotechnology Center leaders look to grow Bucks County facility". The Intelligencer. Retrieved 4 January 2019.
  22. writer, Crissa Shoemaker, staff. "Report: Pennsylvania Biotechnology Center an 'economic engine' for Bucks County".
  23. George, J. (April 12, 2017). "100+ New Jobs on the way: PA Biotech Center to begin long-awaited $13M expansion". Philadelphia Business Journal. The biotechnology center of Bucks county is breaking ground Wednesday for its long-awaited $13 million expansion project. The project will add 47,000 square feet of space.
  24. Murphy, Patrick (September 5, 2007). "Recognizing the Hepatitis B Foundation; Speech of Hon. Patrick J. Murphy of Pennsylvania in the House of Representatives". Thomas Congressional Record. Madam Speaker, I rise today in recognition of the Hepatitis B Foundation and its founders for their many accomplishments inn Hepatitis B advocacy. The foundation, which this year celebrated its 15-year anniversary, also recently unveiled the Pennsylvania Biotechnology Center right here in Bucks County. The Hepatitis B Foundation started in 1991 around a kitchen, as an effort to help a local family suffering from Hepatitis B. Today it is a one of a kind, world-renowned organization... The hepatitis B Foundation is the only non-profit organization solely dedicated to Hepatitis B education, research, and advocacy. The Foundations O'Liver the mascot, hotlines, and multilingual literature all promote awareness and understanding of Hepatitis B. Partnerships with government officials help Pennsylvania become one of the first states to require student vaccinations. Madam Speaker, because of the efforts of ongoing Hepatitis education, there are now 47 states that have hepatitis B vaccine requirements... Madam Speaker, I would like to individually recognize founders and board members Paul and Janine Witte, Timothy and Joan Block, and Executive Director Molly Conti for their dedication the Hepatitis B awareness and medical achievements. I thank them on behalf of the countless people who have learned and benefited from the Foundation. Their compassion for one family truly became a desire to change the world for the better.
  25. "Trip to the White House". Bucks County Herald. August 25, 2011. The Hepatitis B Foundation... participated in the commemoration of the first official World Hepatitis Day at the White House on July 28... Hepatitis Foundation members who were invited to the historic White House event included Chari Cohen, Dr. Timothy Block, and Joan Block.
  26. "Making an Impact". Bucks County Herald. April 10, 2008. GlaxoSmithKline (GSK) hosted its 11th Annual IMPACT Awards ceremony on march 20 to honor either local non-profits. The winning organizations were awarded $40,000 each for their dedication, effectiveness, proactive change significant impact and for providing access to healthcare within their local communities. Recipients include... Joan Block, co-founder and executive director of the Hepatitis B Foundation.
  27. "Contact Us » Hepatitis B Foundation". www.hepb.org.
  28. "ABOUT US - HEP B UNITED". hepbunited.org.
  29. "Storytelling Campaign Provides National Attention to Hepatitis B". 27 February 2018.
  30. "#justB: Real People Sharing Their Hepatitis B Stories » Hepatitis B Foundation". www.hepb.org.
  31. Staff, Hep (29 March 2017). "Hepatitis D: The Hidden Epidemic".
  32. "Welcome to Hepatitis Delta Connect! » Hepatitis B Foundation". www.hepb.org.
  33. "Welcome to our Liver Cancer Connect Program » Hepatitis B Foundation". www.hepb.org.
  34. "February 24 Webinar on Living with Hepatitis B: Cultural Barriers, Stigma, and Institutional Discrimination". 2 February 2015.
  35. "State Declares Hepatitis B Month". Bucks County Herald. June 1, 2006. The Pennsylvania Senate and House provided resolution sponsored by Sen. Joe Conti and Rep. Katharine Watson that designates the month of May as "Hepatitis Awareness Month" in the commonwealth. State Rep. Katherine Watson and Sen. Joseph Conti, at right, present the Pennsylvania Proclamation designating May Hepatitis Awareness Month.
  36. George, J. (August 17, 2017). "Bucks foundation's lobbying nets funding for hepatitis research". Philadelphia Business Journal. The Hepatitis B Foundation's efforts to raise hepatitis B as a national health priority has paid off with the House Appropriations Committee's recent approval of a $1 million budget increase for the Centers for Disease Control and Prevention Division of Viral Hepatitis for 2008... The foundation worked with local official's including Rep. Patrick Murphy, D-Bucks, along with Rep. Mike Honda, D-California, to help educate lawmakers about the importance of making hepatitis B a national health priority.
  37. "Hepatitis B Foundation Testifies Before Congressional Appropriations Committee and Urges More Federal Funding for Hepatitis B." Medical News Today. March 22, 2009. Retrieved March 24, 2008. Hepatitis B Foundation President Dr. Timothy Block testified about the public health challenge of chronic hepatitis B before the Congressional Appropriations Subcommittee on Labor, Health and Human Services on March 13 in Washington, DC, at the request of Honorable David Obey, chairman, Committee on Appropriations. Dr. Block spoke about the urgent need to strengthen and increase funding for hepatitis B programs at the Center for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH).
  38. "Hep B Foundation to advocate at City Hall". Bucks County Herald. May 12, 2016. Representatives from the Hepatitis B Foundation will visit Philadelphia City Council on National Hepatitis Testing day, may 19, to urge city leaders to support increased testing and treatment for hepatitis B and hepatitis C in Philadelphia's at-risk-populations in order to prevent disease and death from liver cancer.
  39. Young, R. (June 30, 2016). "Local Leaders advocate increased hepatitis testing". Bucks County Herald. p. B6(18).
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  45. Anastasi, John (2006). "Biotech". Philly Burbs. The PA Biotech institute also mentors/advises the startups: "We have an open sharing attitude here," said Reitz, who added that the companies include businesses in the biomedical research chemical and medical device fields. "The hallmark of this place is sharing."
  46. "Is a Cure for Hepatitis B Coming? Experts Say Yes". 20 June 2016.
  47. Friedman, S. (August 9, 2012). "Biotech Center Hosts House Majority Policy Committee". Bucks County Herald. Timothy Block hosted State Rep. Marguerite Quinn and the House Majority Policy committee on a tour of the facilities. The tour was followed with a discussion of the life sciences industry to the commonwealth.
  48. Wilen, J. (October 3, 2004). "Unique Research Center Coming to Bucks County". The Intelligencer. "the new facility will contain a "complete continuum" of the life sciences industry from basically the 'Eureka!' moment in the lab... to fully commercialized companies," Block said.
  49. "FDA approval for drug developed in Bucks". Intelligencer. January 24, 2017. A drug developed at the biotechnology center has received approval from the FDA. The approval gives synergy pharmaceuticals the go-ahead to market Trulance to treat adults with chronic idiopathic constipation, a condition that affects 33 million Americans.
  50. "Meeting History » International HBV Meeting". www.hbvmeeting.org.
  51. "International HBV Meeting - Baruch S. Blumberg Institute of Living Science". blumberginstitute.org. Archived from the original on 2018-05-21. Retrieved 2018-06-12.
  52. "Hepatitis B Foundation holds program commencement". Bucks County Herald. September 9, 2010. p. B6(18). The high school Science enrichment program is a two-week course held annually in August. It offers students a "hands-on" experience in state-of-the-art research labs... under the guidance of senior scientists... The college summer research internship program provides junior and senior year college students the opportunity to apply for a competitive 10-week paid summer internship program.
  53. "Program Completed". Bucks County Herald. September 11, 2010.
  54. "Budding Scientists participate in summer programs". Bucks County Herald. September 12, 2013. p. B7.
  55. "Hepatitis B Foundation: College Internship Program". www.hepb.org.
  56. "A future in science; CB students visit research lab". Doylestown Patriot. June 5, 2008. p. 6. All of the young students were encouraged to return in the future to participate in the foundation's high school and college research internship programs.
  57. "Internships and Apprenticeships » Pennsylvania Biotechnology Center". www.pabiotechbc.org.
  58. "Fred Beans Donates $30,000 to Support Hepatitis B Foundation Education Program - Fred Beans". www.fredbeans.com.
  59. "Educational Improvement Organizations - PA Department of Community & Economic Development".
  60. Rice, L. (September 18, 2008). "Hepatitis B Foundation STEERS local students through Summer Enrichment Programs". 1888 Press Release.
  61. "Hepatitis B Foundation helps students prepare for future careers". Bucks County Herald. September 18, 2008. p. 29.
  62. "Doylestown Campus". www.geisinger.edu.
  63. "Geisinger Commonwealth graduates its first MBS-Doylestown cohort". www.geisinger.org.
  64. "College news: Grads and summer school".
  65. "Philadelphia International Education Program - Baruch S. Blumberg Institute of Living Science". blumberginstitute.org. Archived from the original on 2018-06-23. Retrieved 2018-06-12.
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