2003 Conference Highlights

The following is a list of comments posted on the Listening Post at the National Viral Hepatitis Roundtable. When provided, comments attributed to specific individuals are shown

• Need a list of goals and deliverables for the NVHR along with a timetable

• [Goal:] To leave with the passion of those at my table and translate that (passion) into meaningful and appropriate education for physicians on viral hepatitis

• Show me the money!

• Gain strategies or ideas in order to implement a new program

• [Need] a commitment to the mission and goals of the NVHR

• How to implement hepatitis C into our programs?

• [Need] collaboration between community health providers and connections with shared resources

• Establish working groups to implement strategies to encourage a sustained effort

• Learn more about hepatitis A, B, and C. Which groups are working on these diseases? What are they doing? What are the current thinking/needs/goals of each?

• Need a protocol for AAPI hepatitis B carriers, eg, ultrasound 1/yr, ALT/AEP q 6 mo. Hepatitis. A vaccine

• I want to meet 30 people who want to roll up their sleeves and really dig into the writing of the strategy

• I want to make sure this effort is sustained and produces the results for hepatitis A, B, and C prevention and treatment, leave the egos behind

• Worth it…that we keep our focus on the mission of the national strategy

• Best coalition meeting so far, great synergy. Steve Graham

• Networking and working together–plan hepatitis C [vaccination] in prisons. P.K. Beckinmor

• Increase knowledge about hepatitis C program implementation

• What policies can be employed to facilitate adult vaccination?

• More funding for diagnosis and treatment of hepatitis C in particula

• Criminal justice healthcare on public health radar screen Criminal Justice Health Care on Public Health

• Radar Screen to work towards solving the problems of prevention, treatment, and funding through a sound policy and legislative mandates

• [Need] national goal

• Find an ongoing role for myself in the work of the Roundtable–roundtable–board member?

• Improve testing availability

• Asian- American/Pacific Islander issues not being addressed:

>50% of 1.3 million hepatitis B patients are AAPIs
>50% of 5000 deaths are AAPIs

• When only 4% of population isis AAPI. Print the statistics!

• Occupational health nurses can facilitate: Screening and surveillance for adult, family care, based on company health policies

• Educate adults at the workplace and their families during health fairs, as an example

• Provide immunizations

• When contacting professional organizations, consider AAOHN and School Nurses Association and not just ANA. Specialty nurse organizations can provide more interest and focus, be an integral link to employees both in the US and internationally

• Education: hepatitis A service providers [should] add occupational health nurses. Educational programs use workplaces to educate about all hepatitis viruses. Educational vehicles: professional organizations, AAOHN, occupational health nurses in the workplace. Use the workplace, target the workplace

• Create an effective hepatitis C advocacy group that will sustain the energy to keep this process moving forward

• Effort needs to be placed on developing private sources of funding as we do within public services

• How can industry assist the coalition in forming appropriate policy for eradicating viral hepatitis?
• Take home for me: discernable movement to finish the job of eliminating the transmission of hepatitis A by universal childhood vaccination

• Develop a national strategy for hepatitis B screening and liver cancer prevention in the Asian-American communities

• Hepatitis A, B, and C guidelines for federal prison system available at www.NICIC.org or www.bop.gov

• [Need:] solid outline to begin forming strategy

• Would like to see a national effort toward hepatitis vaccination for adults/adolescents–when? Our group, National Task Force for Hepatitis B for API, can help in any way. Son Do

• Develop some permanent relationships, bring home new resources

• [Need] awareness and education

• Prioritize prevention and testing
• What has to happen? Education of the highest-level policy makers both at the state and federal government levels

• Money for adult vaccines! Molli@hepb.org

• Mandate training and education in substance abuse, addiction, and harm reduction for physicians, nurses, and pharmacists

• [Issue:] blood supply safety and hepatitis

• To be successful, all groups must come together and be heard in a nonjudgmental and accepting manner. All groups should form a team with common goals

• Synergy!

• Good outline for national strategy!

• Concrete plans for educating front-line physicians

• Want to see true unity of various groups, come together into one cohesive, powerful group

• Direction and strategy for where this group should be headed

• We need physician buy-in. Need some champions across the country. Need education to the general physician population

• Want barriers broken between various groups so that we can work toward a common goal

• Funding for hepatitis B vaccinations for hepatitis C patients

• Look for signs of sustainability of the conclusions reached at this event. T. Saari

• [Need a] centralized contact list on NVHR website. Also, individuals to maintain their own contact info for all others to see

• Provide patients with accurate information/education about transfusion-transmitted hepatitis

• Move forward with things that work (have been proven). Drop the political agenda

• Involve as many people as possible in the NVHR

• [Need to be] more realistic, more practical with planning for treatment, for vaccination

• Develop a synergy among the various organizations concerned with viral hepatitis

• If the strategy is implemented, seeing results soon is important to be re-energized

• [Need] hepatitis B and hepatitis C to work together

• Be realistic with, and in, the funding crisis

• [Need] insurance for adults for immunization. We have new data on what Medicaid covers in adult vaccination. Most states have it s a benefit, but…they pay for administrative fees and not for the vaccine–mainly because they think public health [groups] pay for it. We are collecting data on private health coverage for adults. So far it looks good. We need to get insured children to stop using public-purchase vaccine so we can use that funding for adults. Allison Johnson

• [Need] acknowledgement of pediatric hepatitis and its issues

• [Need] concrete, clearly defined action steps. Marching orders for everyone to fall into. Where to now?

• [Need] a willingness by NVHR members to try to continue to meet and work online to expand [the hep] community and workgroups

• Unified front! Stop the bickering; come up with initial stages of action plan. Include lobbying and follow-up steps

• AAPI issues not appropriately addressed

• Occupational health nurses and employers/places of employment are used as focal point for prevention/surveillance and education. Mary Gene Ryan

• Any chance for federal guidelines to be developed to also catch viral hepatitis in immigrants?

• Need beginnings of national strategy and action steps for what to do after the meeting. Roundtable needs to continue

• Valuable time spent playing games

• [Would like to] personally meet individuals

• Liver wellness got short shrift. [Need] pre-meeting information

• Use resources now to get more (resources) so the strategy will work

• To do: place the conference proceedings up on the NVHR website; audio files, power points, text transcript

• Need to educate physicians on hepatitis B, especially screening/treatment guidelines specific to Asian-Americans and Pacific Islanders

• [Need info on] treatment and prevention in criminal justice system

• No lip service

• There will have to be an emerging consensus on how to implement a strategy to vaccinate, screen, and treat people who have viral hepatitis that emphasizes reaching out to high-risk, marginalized populations

• Diversify further to include college-age participants

• Primary preventive education needs more focus

• Witness a sustained partnership effort

• More support for federal bills and community-based groups

• Improve rural education

• Consider all ideas provided in the brainstorm working group sessions. The very vocal advocates tend not want to consider opinions different from their own, and those ideas got lost

• Improve personal knowledge of hepatitis C

• Need specific standards/guidelines for screening and treatment of hepatitis B for AAPI

• Hepatitis can be eliminated, much like polio. Our nation (and the world) has the resources and expertise to accomplish this goal. Like the eagle, we need to visualize the goal and focus our energies on it. We must be tenacious like the tiger in our effort, working together like the dolphins and wolves to attack the gaps in our knowledge and to communicate with the nation. Our strength is in the diversity we bring to the issue–peoples, social issues, and politics. We have one thing in common: the desire to see this infectious disease banished from our land, our earth. Organizing this diversity will not be easy, it can be done

• [Focus on] liver wellness

• [Need] ideas and partners for advocacy on viral hepatitis

• Need to have written a list of action items for each–A, B, and C–for this to be workable/successful

• [Need] a unified voice

• [Hope] to make new contacts and find resources

• Assure a public policy issue on the federal level

• Strategy outline includes prisoners and public health

• Lay the groundwork for a national plan

• Need specifics vs requesting more resources. Is it funds for vaccines? Funds for testing? Need specific categories so we can partner effectively with one another

• Understand how our team can interact with some/all/many of the groups represented here to make a difference in the way hepatitis B is diagnosed and treated

• [Need] less focus on what other programs have (such as BT), less jealousy; more strategy to partner with these (well-funded) programs

• [Goal:] concrete, reasonable, reachable recommendations for addressing this issue of eliminating/decreasing viral hepatitis at the national level

• I love the emotion of getting or hearing a great idea. A successful trip will be one where a “spirit of creativity” was shared and brought to problem solving

• Framework that outlines areas we’ll each fill in with our expertise, and then get moving on a strategy

• Develop national strategic plan for hepatitis prevention and control

• Identify funding sources for hepatitis C testing and counseling and for HAV and HBV vaccination in high-risk groups

• Develop networking with different organizations and others to support what I am doing
This group must continue to work to achieve these objectives

• Educating providers: hard to get them out of the clinics; however, pharmaceutical companies already have established relationships with providers. Pharma companies have the means to provide educational materials. Therefore, NVHR could form a workgroup with those pharma companies already supporting NVHR. This workgroup could focus on educating providers

• [Goal:] finding ways to maintain and expand adult A and B vaccination. To have realistic goals established for reduction of viral hepatitis. To have concrete steps that states can implement to reduce viral hepatitis. To have a national approach in reaching the homeless population. To define an ideal approach to conquering viral hepatitis. To see a better working relationship with CDC programs where integration is supposed to occur, ie, STD, HIV, immunization, mental health, and substance abuse

• I feel connected to these individuals, more so than I have at any conference or meeting. Perhaps because I choose to? I want to stay connected. I am so tired of going to meetings and “networking”… meeting new people only to fall out of touch with them until I see them again…only to return to my own work and the “I am an island” mentality. I want to work as a pack. I want to see groups that work…and remain together over time. Growing and changing but with concrete goals and objectives. I want to see these “sub groups” flourish and grow but also remain open and inclusive. I want to see the fire of this meeting, the passion of unity and a national strategy to return home with each one of us. Pulling us together, regularly. To accomplish our goals. To eliminate viral hepatitis

• We should develop an inventory of existing science and resources and inventory gaps

• [Need a] SWOT (strengths, weaknesses, opportunities, threats) analysis

• Identify ways to strengthen lobbying efforts. Work together with labs and providers to collect/report data more consistently; provide better follow-up for newly identified infections; develop action plans for the coalition and a specific time line; remember the urgency to act. We need to paint a realistic picture to the nation and policy makers of the need for action, for funding programs for viral hepatitis. We need to educate the nation on the economic cost of not addressing this

• Overcoming barriers:
Whatever the barrier, one should think beyond it by focusing on the result/outcome
Then avoid/overcome barriers and achieve long-term objectives without injuring self or others…through effective, collaborative partnerships

• Creative ideas:
Create an integrated (public/private/federal/state/local/industry, etc.) system for assuring an adult vaccine program is in place in under 10 years

• Review the animal exercises and group them by major foci...ie, collaborative/cooperative, gentle, nurturing, fun loving and loyal; aggressive/protective, fierce, indomitable, laser focused; neutral/intelligent

• [Goal:] gaining post-meeting commitment to work together on group/individual actions. Sharing best practices and looking at integrating the systems behind them. Reviewing a broad system, inter-relating public/private sectors towards problem solutions, ie, federal/state/local/industry public health and corrections and hepatitis community. Look at best practices and evidence-based info. Look toward integration of best practices on a national basis

• [Goal:] a unified voice coming together to eradicate viral hepatitis. To make a major change in the landscape of public health. To influence public policy. To find a way to work together on the development of a national strategy. To be part of implementation of new way of working. To make available information and services to people who need it, in a way that they can receive it. In a way that is culturally appropriate. To end the needless/senseless deaths of liver disease. To influence the world so that livers are available for transplantation. To influence organ donation, to increase by 100 fold the number of cadaver livers. To make every American an organ donor. To change the way people think

• The most important reason for being at this meeting is to get all the resources together. All these groups have been working very hard and doing a great job on their own, but, by bringing them together, we will have a better chance of getting national attention, better focus, increased funding and reduced duplication of efforts. If all groups share the tools they use to get their message out, then we will have great marketing and educational tools and materials to share. We all have limited funds, so sharing ideas and literature can only benefit all of us. I would like to see college-age students involved in the Roundtable. They have a lot of energy and ideas on getting the message out in an effective way. This is a group that can be instrumental in our efforts. Kathleen Matthers

• Integrate prevention and treatment services for injection drug users (IDUs), such as needle exchange and drug treatment, in appropriate settings, including jails

• Drug users are probably the most stigmatized and excluded population in the US. Rarely do they receive recognition as an autonomous group that needs supportive resources. The damage caused by the war on drugs was deliberate, and we need to act against it to change its course. The needs of drug users, their families, and communities needs to be high on the agenda for this meeting in terms of prevention, vaccines, treatment access, prison reform, housing, vaccine development, testing, and screening. Syringe exchange programs need to be recognized as valuable resources in reaching out to drug injectors. The participants in this meeting have to be aware that it is not just the practice or act of drug use but the conditions under which the drug users live that needs to be addressed. Drug users are integral members of all of our communities, not individuals who have suddenly become disenfranchised. The only limit to the amount of work that we can do is the limit of our imagination

• For education: please consider including language specifying that educational materials and interventions should be science based and incorporate behavior change theories in order to be effective
Resources are always the same, it is the priorities that change. We have to become a priority

• I have thought a lot about my family, my girls, and my wife. However, I realize also that there is a bigger family, my relatives, friends, and communities. Although I would like to spend time just with my family, I am compelled to contribute to the larger extended family as well. I hope that all of our great minds and the efforts of the extended family and friends at this Roundtable conference will be effective and make a big difference in developing a national agenda for viral hepatitis. Sometimes I feel like each of us, each of our groups, is spinning the wheel in circles

• Reach out to immigrant communities