The summer before starting medical school, most of my friends traveled and had fun. But I could not.
The months of June and July marked 60 days of complete horror—the lowest point in my life. First, my sister suffered a near-death medical complication. Then, for the first time in my life, I experienced discrimination due to an unexpected medical diagnosis.
My discrimination story started on June 20, 2011. The director of admissions at (X) Medical School notified me that I had been accepted into their program and offered a generous scholarship to attend. Because of this scholarship and the potential to obtain in-state residence, I dropped the other medical school I had been considering, including a $2,500 enrollment deposit.
I began the grueling paperwork to matriculate to (X) Medical School. It took nearly a week to schedule doctor appointments, fill out health forms, get required blood work done, look for apartments, and apply for financial aid. The following week, I traveled across the country to finalize an apartment lease. I returned home less than 24 hours later, exhausted but having successfully signed a lease.
Then my doctor called and said, “You have hepatitis B.” The nightmare began after that call.
The next day, (X) Medical School’s Student Health Services demanded that I have further blood tests within three days; otherwise, their committee would not be able to review my file before the start of classes.
I completed all of the tests, and the results were sent to the committee within a week. I pleaded with the committee to keep me enrolled, and I even agreed to drop out of medical school if the antivirals did not work.
The response from (X) Medical School came one week before orientation started: I was deferred until next year. In addition, my scholarship was revoked. They demanded that I sign a contract accepting deferment with conditions, including no guarantee of readmission and I had to sign within a week of receiving this devastating news.
At that moment I had to juggle not only my new medical diagnosis, but also the fact that I had a lease that could not be cancelled or sublet, a full year without any plans, and uncertainties about my future.
The nightmare still lingers. However, I am slowly getting back on my feet. The antivirals are lowering my viral load. I am working in public health and reapplying to medical schools. My future is still uncertain.
Note: This story is one of the four cases that galvanized the Hepatitis B Foundation into action. At a June 2011 meeting convened by the CDC, the HBF and other national thought leaders worked with the CDC to update their 1991 hepatitis B recommendations for health care workers and students, which were just updated, July 2012. It is hoped that the newly Updated CDC Recommendations for the Management of Hepatitis B virus- Infected Health Care Providers and Students guidelines and advocacy efforts of HBF and others will make a dent in hepatitis B based discrimination. Please note that these newly revised guidelines strongly state that hepatitis B is not a condition that should prevent anyone from entering or practicing in health care.
Hepatitis Awareness Month has come to a close, and it has been one exciting, busy month for those of us at HBF and Hep B United Philadelphia. In the course of 6 weeks, we have had many of our major events of the year – nearly all featured during Hepatitis Awareness Month or on Hepatitis Testing Day. Have a look at what we’ve been up to this past month…
On May 15th, AAPCHO and HBF, with the support of the U.S. Department of Health and Human Services’ Office of Minority Health, launched the Hep B United national campaign. This unique partnering and collaborative effort will bring attention and action to end hepatitis B – especially among high-risk Asian Americans and Pacific Islanders (AAPIs) in the U.S. You’re going to see a lot of activity out of Hep B United...
HBF’s Director of Public Policy & Affairs set off to Washington D.C. to attend the Congressional Briefing on Chronic Viral Hepatitis and Liver Cancer hosted by our champions in Congress. Keeping Hepatitis in the hearts and minds of our elected Representatives is paramount in supporting viral hepatitis efforts in our country.
Hep B United Philadelphia wrapped up its awesome “B A Hero” PSA video contest and finalists and winners were announced. Check out these great PSAs!
Hepatitis Testing Day and the days leading up to the event were extremely busy for the Hepatitis B Foundation, Hep B United Philadelphia, and Partners. We kicked off testing day with our awareness-raising Flash Mob Event in Love Park in Philadelphia. This fantastic event included special guests Mayor Nutter, and Councilman David Oh, and plenty of other notable Hep B Heroes in attendance. It was an honor to receive a City Proclamation by Councilman Oh, supporting efforts to eradicate hepatitis B in the city of Philadelphia. And of course the students put their spin on the event with a “B A Hero” Rap. You have to listen to this...
Saturday, Hepatitis Testing Day, Hep B United Heroes donned their hero capes for the Hepatitis Testing Day Event held at the Asian Pacific Heritage Festival in Philadelphia. It was a successful event with 112 screened. Those screened and in need of vaccination will be provided with the HBV vaccination series, free of charge, from the Philadelphia Department of Health.
That same day, Hepatitis B Foundation heroes hosted HBF’s B Informed Conference. This year’s conference was specifically directed to parents of children with hepatitis B. This was an incredible full-day conference. Expert specialists in the field addressed both the medical issues and personal challenges of parenting a child with hepatitis B. It was a wonderful opportunities for parents to meet and discuss, face-to-face, with families facing like challenges. Lasting bonds were created that day. You’ll want to check back at a later time to read a reflection on the day, and access information presented by our expert speakers.
And finally we end this month’s awareness efforts this weekend by participating in the Philadelphia Independence Dragon Boat Regatta. Team Philadelphia Hep B Heroes will (hopefully) row their boat to victory, but even if they don’t win, they are winners at heart. The team is composed not of an expert crew, but rather Hep B United Philly community partners, student partners and staff. If you’re in Philly, stop by and cheer the team to victory. Plenty of team members will be at the event to raise HBV awareness and discuss hepatitis B testing, prevention and treatment.
There were a lot of Hep B Heroes out there this month. Feel free to share the events of your organization this month!
On May 17, I attended the Congressional Briefing on Chronic Hepatitis and Liver Cancer, hosted by our unwavering champions, Congressmen Michael Honda (CA) and Charlie Dent (PA).The room was filled with representatives from the advocacy community, elected officials and government agencies, and industry.
The event was scheduled to promote the first National Hepatitis Testing Day (May 19th) and to acknowledge the one-year anniversary of the HHS Action Plan for the Prevention and Treatment of Viral Hepatitis. Congressman Honda also wanted to recognize his colleagues who have joined the new Congressional Hepatitis Caucus and also attended today’s briefing: Judy Chu (D-CA), Bill Cassidy (LA), Hank Johnson (GA), Barbara Lee (CA) and Donna Christensen(Virgin Islands). Although Congressman Dent was unable to attend the event, he sent his full support of both the issue and the event.
We now see more Congressional champions supporting the Hepatitis initiative, and in many cases sharing their own personal stories on how this disease has impacted their lives. For example, Congressman Johnson spoke about his personal experience in combating hepatitis C and the need for more action to increase testing and access to care.
The HHS Assistant Secretary for Health Dr. Howard Koh was one of the most charismatic persons in the room, giving credit to both the Congressional Champions and the public health heroes.
Dr. Koh also specifically mentioned that the Hepatitis B Foundation, a Pennsylvania non-profit organization, has done incredible work developing a strong system to ensure that chronic hepatitis B patients identified during community screenings have access to care. Dr. Koh also commended his agency colleagues at HHS – Dr. Ron Valdessari, Ms. Corrina Dan, and Ms. Sophie Tan for their tireless work to address this public health crisis.
It is all of these resources coming together and the strong interagency collaboration that has helped bring about the first National Hepatitis Testing Day in the U.S.. Dr. Koh also mentioned that the updated hepatitis C screening guidelines would soon be available.
Dr. John Ward (DVH/CDC) spoke about the power of the CDC’s “Know More Hepatitis“campaign and how interagency collaboration are positive steps toward getting the epidemic under control. Dr. Ward also mentioned the successful Hepatitis B models in Philadelphia and Seattle, and noted that there will be more resources available in the future.
The CDC views viral hepatitis as a national crisis and Dr. Ward encouraged everyone to access the CDC website. In particular he mentioned a new CDC risk assessment tool that will help prompt testing discussions between high risk individuals and their doctor.
Mr. Bob Lubran (SAMSHSA) who oversees 1,250 opiod treatment centers across the country spoke about the challenge of treating Hepatitis C patients in these settings. He called for an extensive education program not only for patients, but for supporting health-care personnel. There is also a significant challenge involved in managing viral hepatitis hepatitis patients and ensuring they remain on their treatment. Mr. Lubran stated that almost 80% of the folks in these treatment centers are infected with hepatitis C.
The last speaker of the morning was Daniel Raymond, current chair of the National Viral Hepatitis Roundtable (NVHR) and representative of over 200 member organizations working at the grassroots level to promote community education and screening. In his remarks he noted that there have been some successful programs, and that we are seeing many patients identified and getting care,but there is certainly more work to be done. We are not winning when it comes to effectively screening those at-risk groups such as pregnant women, AAPI communities, and HIV-infected MSM for hepatitis B, and subsequently vaccinating those individuals that would benefit. We are also missing an opportunity to screen for hepatitis C and potentially treating and curing identified patients. There is a solid plan in place, but we still have a long way to go.
Molli Conti Director, Public Policy & Affairs Hepatitis B Foundation
I have the best job in the world. I get to walk all around Philadelphia, meet people, and talk with them to find win-win collaboration opportunities. Creativity and innovation are required at all times for adaptations to the ever-changing environment in a diverse and bustling city. My schedule is rarely the same from one week to another—productive late night meetings and well-attended weekend health fairs make me happy. I am never bored.
Community work on the local level is challenging, yet extremely rewarding. This is the level where the lack of resources can be felt most significantly. This is also the level where the fruit of our efforts are the most direct and observable. Being the program manager for Philadelphia’s local hepatitis B coalition, driving day-to-day progress to accomplish the coalition partners’ common goals, has caused me to place high value on partnership and collaboration. There is a Chinese idiom that says “three ignorant cobblers together exceed a Zhuge Liang”. Zhuge Liang was a genius war strategist during the Three Kingdom era at the turn of the 2nd Century. The idiom emphasizes the importance of collective wisdom. Since our community partners are smart and savvy, and could never be described as “ignorant cobblers”, our collective wisdom and effort have achieved great things and made significant impacts in the Philadelphia community—even with the limited resources available to us.
Imagine my excitement when the individual local grassroots hep B campaigns from around the U.S. came together and decided to form a national coalition—Hep B United (the Philadelphia campaign becomes Hep B United Philadelphia). Having a formal national coalition will help local campaigns to become more versatile and more effective, both collectively and individually. Having a national coalition means there will be a unified body of leaders that are connected to the local efforts. They will be able to work with federal and national partners without losing touch with the local campaigns. A unified national presence and identity will also strengthen the ongoing advocacy work to raise awareness among policy makers. Within the national coalition, resource sharing will become more efficient, preventing redundancy or duplication. The quality of our communication across the nation will also improve due to a stronger infrastructure. The local campaigns will enjoy elevated profile thanks to the national-local one-two punch of increased exposure. Ultimately, all of these benefits will help us better serve our communities.
The creation of this national coalition has been in the works for months. The Hepatitis B Foundation is one of the main leaders, and has been faithfully moving the progress along throughout the whole process. As of last week, the official logo for the coalition was voted on and approved. And in the upcoming weeks, each local campaign will gradually update their materials, online and printed, in alignment with the national campaign. While getting a new name is certainly a fresh new beginning, we continue to work with the same integrity and diligence that will always be our identity.
Wednesday I participated in the Liver Capitol Hill Day Visits sponsored by the American Association for the Study of Liver Diseases (AASLD). I wanted to write this reflection to demystify Hill visits for those that are reluctant to participate or feel that they are not particularly political or up on on the legislative issues. I would certainly put myself in that category, but I am an HBV advocate, and I recognize that there are simple ways I can participate that might make a difference for those living with HBV in my state and in our country.
Liver Capitol Hill Day was a well organized event with specific “talking points” and “asks”, and the logistics were very well coordinated, but in general the individual visits themselves were the same as others where I have participated. If you are in D.C. and wish to visit with your Representative or Senator’s office, I would highly encourage it. They want and need to hear from their constituents, and if you have a personal story to tell, that’s even better.
Call your Representative’s or Senator’s office and ask to make an appointment with the staff member that handles health issues. If you are not sure who your Representative is, merely type in your zip code at www.house.gov. To determine who your Senators are go to www.senate.gov and select your state from the drop down member. Call them and set up an appointment. If you are looking for specific talking points, you could consider contacting an organization like the Hepatitis B Foundation, AASLD or other viral hepatitis organizations that might be able to provide you with some ideas for your visit.
It is very unlikely you will even catch a glimpse of your Representative or Senator, so don’t worry about feeling nervous. The Staffers are accustomed to constituents coming in with their requests. There is nothing formal about the meeting and often you are crammed in a closet-sized room with a desk and a chair, or meeting wherever there is space. This is definitely not a formal presentation and time is tight. Plan on the whole visit taking 20 minutes or less. No one will be offended if your piece isn’t well-polished, or if you pull out a paper with your talking points. I always show a picture of my daughter in the hospital, after one of her liver biopsies. It really personalizes the visit.
This is a great opportunity to tell your personal hepatitis B story. It puts a face on the infection. Often, your staffer will have little or no knowledge of viral hepatitis, but from that moment on, your face and your story will be what he remembers.
I am terrible with numbers, but because this is a time of tight budgets, I always drive home the much lower cost for prevention, screening and treatment versus caring for a patient with advanced liver disease or liver cancer, or a patient in need of a liver transplant. There are the obvious medical costs, and likely the inability for the person to continue working. And of course there are the emotional aspects. In my case, my daughter was fortunate to have treatment and respond at a young age. It was expensive at the time, but nothing compared to costs associated had we been unaware of her HBV status, and her condition had progressed over time to a much more unfavorable outcome.
So consider meeting with your Representative or Senator while you are in D.C., or even at their local, home office. If you’re still not comfortable with the idea of meeting face-to-face with the health staffer, then please consider calling or emailing your Representative’s and your Senator’s office and telling them your personal story living with hepatitis B. It only takes a few minutes, and last week’s blog will tell you exactly what you need to do. We need your help!
If you read Hepbtalk’s blog last week summarizing the Viral Hepatitis Policy Summit, you know that it will take efforts from all advocacy organizations and people like YOU telling your story and asking that money be dedicated to viral hepatitis. Please get involved. We need YOUR help!
On February 13, 2012, President Obama kicked off the Fiscal Year 2013 appropriations process with the release of his budget proposal. The President’s FY2013 budget flat funds the Centers for Disease Control and Prevention (CDC) Division of Viral Hepatitis (DVH) at the total funding level of FY2012 – including the $10 million from the Prevention and Public Health Fund. We need your help in raising awareness among Members of Congress about viral hepatitis and asking their support for increased funding for viral hepatitis activities at the federal level. Viral hepatitis advocates are urging for protection of the President’s request and an increase to $59.8 million for DVH, which is $30.1 million more than the current funding level of $29.7 million.
In the next 2-3 weeks, all Senators and Representatives will write their “programmatic appropriations request letters,” which ask members of the Appropriations Subcommittees (who put together the federal funding legislation) to include funding for their priorities. The more Members of Congress that include a request for hepatitis funding in their letters, the greater the likelihood the Appropriators will include additional funding in FY2013.
Viral hepatitis impacts over 5.3 million people nationwide. With a lack of a comprehensive surveillance system, these estimates are likely only the tip of the iceberg and 75% of those infected do not know their status. Even with these daunting figures, there are only $29.7 million in federal funding dedicated to fund viral hepatitis activities nationwide at the CDC. Members of Congress need to know that viral hepatitis is a concern in their district, that their constituents are being affected and that this is an issue they need to care about. We need you to tell your story and ask your elected representatives to take action by March 20.
Step-by-step instructions on what to do are below:
Determine what Members of Congress to contact. You should contact your personal Member of the House of Representatives and two Senators. You should also contact other House Members in areas where your organization is located or provides services. To determine who your Representative is please go to www.house.gov and type in your zip code(s); to determine who your Senators are go to www.senate.gov and select your state from the drop down menu.
Call the Members’ Offices to get the name and correct spelling of their health staff person. Email the staff using the draft email text below. House staff emails are First.Last@mail.house.gov (john.smith@mail.house.gov) Senate staff emails are First_Last@Last name of Senator.Senate.gov (john_smith@doe.senate.gov)
Sample email:
Your Name
State and Zip code
Dear (Name of Health Staffer):
My name is ____________ and I live in City/State. I am writing to urge Representative/Senator________________ to include funding for viral hepatitis in his/her Fiscal Year 2012 programmatic appropriations request letter. [Include brief details on the impact of viral hepatitis on yourself or describe your organization].
There are over 5.3 million Americans impacted by viral hepatitis but the only dedicated federal funding stream provides a mere $29.8 million through CDC. This is insufficient to provide the most basic public health services such as education, counseling, testing, or medical management for people living with or at risk of viral hepatitis.
I urge Representative/Senator ___________ to support the President’s budget request of $29.8 million for FY2013 and increase the request to a total of $59.8 million for the Division of Viral Hepatitis to effectively combat these epidemics. I will be following up with you in the near future to discuss this request. In the meantime, feel free to contact me with questions.
Thank you again for consideration of my request.
Your Name
Follow-up with the staff you have emailed with a phone call to confirm they received the request and to determine when they may have an answer from their bosses as to whether or not they will include a hepatitis funding request in their Appropriation programmatic request letter. If asked, make it clear to the staff that this is a program request and NOT a project request (i.e. money for a district specific project like a bridge, hospital or university). You may need to follow-up again around the time the staff says they will have an answer from their chain of command.
If you need assistance or want to talk through the process please email or call Oscar Mairena at (202) 434-8058 or omairena@NASTAD.org. If the staff member requests “report language” or “program language,” please contact Oscar and he will provide that for you. Please also share positive responses with the Hepatitis Appropriations Partnership by contacting Oscar.
Oscar Mairena
Senior Associate, Viral Hepatitis/Policy and Legislative Affairs
National Alliance of State & Territorial AIDS Directors (NASTAD)
L-R Daniel Raymond, NVHR Chair, Congressional Champion Staffers: Jirair Ratevosian (Congresswoman Barbara Lee), Philip Schmidt (Congressman Joe Serrano), Adrienne Hallett (Senate LHHS Appropriations Subcommittee, Senator Harkin)
Earlier this week, I attended the 2012 Viral Hepatitis Policy Summit held in Washington D.C. The audience at the summit is viral hepatitis advocates for both hepatitis B and C. With the recent data on deaths from HCV surpassing those from HIV, and with an arsenal of new, effective drugs, HCV is clearly in the forefront of discussions at this time. Since my personal experience is HBVpatient oriented, I always struggle with keeping up with the details of the meetings, but I suspect most people reading this blog are in the same place, so I’ll try to make the take home message as simple as possible.
The first day was held at NASTAD with visits from Dr. John Ward of the CDC, Division of Viral Hepatitis, and from Dr. Ron Valdiserri and Corinna Dan of the Health and Human Services (HSS) Office of the Assistant Secretary for Health, Infectious Diseases. Everyone is anxiously awaiting the release of the CDCs updated hepatitis C screening recommendations. They will be coming out later than expected, and that is unfortunate because it is hoped they will be released in time to help drive the guidelines written by (US Preventive Services Task Force)USPSTF, which helps determine what procedures will ultimately be covered by Medicare (and paid for by private insurance companies as well.) As of now, it doesn’t look like the USPSTF guidelines will include HCV testing for high-risk individuals, so it is hoped that the CDC recommendations will counter these guidelines to help improve future HCV screening rates in the U.S. This potential time bomb was a source of conflict throughout the entire two days of the summit.
The other hot button was the $10million that was allotted to the Division of Viral Hepatitis to carry out all tasks viral hepatitis oriented. I’m no accountant, but there’s a lot of work to be done and $10M is not that much money in the scheme of things. How will this money best be put to use – collecting surveillance data, running screening programs, linkage to care for those who test positive, HBV vaccinations…the list goes on. And the money must be carefully monitored and be associated with a successful program if we are to warrant additional future funding. One message was made clear – advocate groups had best collaborate and be very creative in order to make things happen on the viral hepatitis front. I believe this is true, but it’s hard to make things happen without money to build the infrastructure or put these programs into place.
The second day was held at the Rayburn building, which is one of the Congressional office buildings. There was a full day of presentations, starting with visits from some of viral hepatitis’s champions in Congress including Congressman Honda (CA), Congressman Dent (PA) and Congresswoman Judy Chu (CA). There are other champions in Congress, but we need more if we are to make a dent in the viral hepatitis problems. That’s where the work of the advocates and those living with hepatitis come into play. You need to get involved and make your state Representative understand how serious viral hepatitis is in his or her district.
There were various panels throughout the day including a panel of staff from some of the viral hepatitis Congressional champions, guests from the Office of Management and Budget (OMB), and an informal discussion with DC based policy experts on working with the Administration and Congress. Then there were the discussions of fiscal year 2013, appropriations discussions, a discussion of viral hepatitis testing and health care reform and how it applies to viral hepatitis. That’s a mouth full. I spent a lot of the day trying to figure out what money was really available, where it came from, and which pots of money were in jeopardy of disappearing. It’s complicated, and I’m not going to pretend to really understand it. There’s the President’s budget and what he recommends. Budgets need to be passed by the House and the Senate, which is very tough these days with the political and fiscal climate on the Hill.
I don’t believe it’s necessary for the average American living with viral hepatitis to talk-the-talk and track the pots of money that may or may not ever be dedicated to viral hepatitis. Your Congress person is under a lot of pressure to make fiscal decisions based on the needs of his or her constituents. We were told they literally enter their top picks into the computer on where they think money should be spent. It is our job to see that viral hepatitis is on the list. One of the staff members noted how important a number of small splashes are compared to a big splash that may occur with large, media driven events. He gave a take home message that even I can understand. As viral hepatitis advocates or patients living with hepatitis, if just one person from each district were to contact his Representative and drive home the importance of funding for viral hepatitis, it would make a difference. We need to put viral hepatitis on the radar of our Representatives and our Senators. Few politicians are knowledgeable about viral hepatitis. Individual efforts would go a long way towards educating and raising awareness of the people that are representing us in office. Make the story personal. Let them know the cost of treatment is nothing compared to the cost and burden of transplantation. Make viral hepatitis part of their vocabulary and put a face on it.
The final message I got, which is more patient oriented, was based on a side discussion about what happens after testing guidelines are established. For example, there are testing guidelines for HBV, and yet even those in high risk groups may not be getting tested, nor are they vaccinated. One physician recommended that as advocates, we need to stress the importance of these guidelines to the professional associations to which our doctors belong. That is the job of advocacy organizations like the Hepatitis B Foundation and others. However, ask around and see if you, or friends and loved ones are being screened for diseases such as HBV, HIV or HCV. Does your doctor ask you if you are foreign born, or if you travel frequently to developing nations? Does he spend enough time with you to know about your lifestyle and whether it might put you at risk? Most likely, your doctor does not know if you are willingly or unwillingly involved in activities that may increase your risk for HBV. It’s yet another reason why it’s so important for patients to get involved in their own care and offer up information that might make your doctor consider preventive screening. And if all else fails, ask your doctor about being screened for HBV, HCV or HIV if you believe you are at risk.
Action Alert! The Hepatitis Community Responds to Health Care Reform. Tell Congress Not To Cut The Prevention and Public Health Fund
The Prevention and Public Health Fund is under attack in Congress once again. Some leaders in the House of Representatives would like to make drastic cuts to the Fund as part of negotiations on a long-term deal on the payroll tax cut and Medicare payments rates to medical providers.
The Prevention and Public Health Fund, part of the Affordable Care Act, provides money each year for vital prevention and public health services. The fund will grow each year until it eventually provides $2 billion/year.
This fund is extremely important to the nation’s fight against the viral hepatitis epidemic. Later this year, the Department of Health and Human Services is expected to allocate $10 million from the Fund for viral hepatitis screening, testing, and education programs. This initiative will greatly help efforts to identify the millions of Americans who have chronic hepatitis B or C and link them to care and treatment.
Please take a few minutes to call Congress in support of this lifesaving program!
What YOU can DO:
Please call your U.S. House Representative and two U.S. Senators immediately. We are hearing directly from Congressional staff that phone calls are the most effective form of communication.
Call the Capitol Switchboard toll-free at 1-888-876-6242 and ask to be connected to your United States Representative. When you reach your Representative’s office, tell whoever answers the phone that you are a constituent and that you would like to speak to the staff person who handles health care issues. Whether you speak to the staff person live or leave a voicemail, tell him/her:
“My name is _______________ and I live in (city/state). I am calling in strong support of the Prevention and Public Health Fund, which is an important part of the Affordable Care Act. This Fund is a great opportunity to provide badly needed funding for viral hepatitis prevention, testing, and screening programs and must be preserved. I urge Representative_____________ to oppose any efforts to cut the Fund as part of the payroll tax/Medicare physician reimbursement negotiations.”
After you speak to your Representative’s office, call the Capitol Switchboard again and deliver the same message to the health care staff person in your two U.S. Senators’ office.
Thank you for taking the time to make a difference! Please spread the word.
Join Hepatitis Health Action’s Facebook group: http://tinyurl.com/hephealthfacebookwhere you can participate in discussions with other advocates and share your ideas and strategies.
Hepatitis Health Action is a campaign led by viral hepatitis advocates working to make sure that health care reform addresses hepatitis B and C.
Last week was an eventful week for this HBV blogger. I was fortunate to be able to attend the National Viral Hepatitis Technical Assistance and the National Viral Hepatitis Round Table (NVHR) meetings in Washington D.C. last Tuesday and Wednesday. These meetings were followed by Capitol Hill visits on Thursday by viral hepatitis advocates to their legislative offices.
In attendance at the meeting were state viral hepatitis coordinators from around the country, other state health department personnel, government representatives from various agencies and organizations, and numerous viral hepatitis advocates from various non-profit organizations. It was a great opportunity to meet colleagues from all over the country dedicated to combating viral hepatitis in the United States.
Please keep in mind that my background is patient oriented, and that I do not have a master’s degree in public health, nor do I have experience working in the public health system. Keeping up with the political front is challenging as is keeping up with the public health system. I’m still trying to figure it all out. Both have their own language and acronyms. After a couple of days of meetings, I have a great deal of respect for those working in public health at both the federal and state level. I also have a great deal of respect for those working to push policy on behalf of viral hepatitis. There’s always more to learn, but you can still make an impact by jumping in and getting involved at a number of different levels.
A couple of messages were loud and clear at the meeting and you didn’t need to be an expert to understand them. Perhaps the biggest message is that funding for viral hepatitis public health programs is very limited and the burden is well beyond the level of funding. This comes as no surprise since these are difficult times for both state and federal government programs. This lack of funding will require that all health departments, government organizations and agencies, advocacy groups and non-profits pull together using what I call the 3-C’s: communication, coordination, and collaboration. Don’t forget to be creative, resourceful and wrap it all up with a coordinated IT system.
What was nice about this forum is that people were able to see what was going on in other states. Bringing people together infuses new information into the group, while creating relationships where people want to help one another. This is imperative if we are to address viral hepatitis needs with a minimal budget. One viral hepatitis coordinator reminded people during a break-out session that there are small pots-of-money out there, but you’re going to have to be creative when looking for grant opportunities.
Chris Taylor from the National Alliance of State & Territorial Aids Directors (NASTAD) asked me, and others to do a video-taped interview where I was asked about my personal hepatitis B story. This was a great way for me to make a contribution, and I was happy to help. Telling your story can be a compelling way to raise awareness and get involved.
Natalie Cole was in D.C. doing a press conference promoting her “Tune In to Hep C” campaign. NASTAD arranged for her to make an appearance at the NVHR meeting. It’s always great to have a celebrity figure to promote a cause and raise awareness with the general public. They are able to reach so many people at one time!
Thursday’s Capitol Hill visits were a great opportunity for viral hepatitis advocates to get in front of their own Representatives in Congress, or their state Senators. Each person on the visit brought her talents to the table. Some were up on politics, policy and the process, while others dealt with the hepatitis at the public health level. Finally, there are people like me that are most familiar with hepatitis B on a personal level.
The meetings made it clear that we all need to collaborate and be creative if we are going to combat viral hepatitis. Americans living with viral hepatitis may be wondering what Washington or their home-state is doing about viral hepatitis. Things are being accomplished. Based on the Institute of Medicine (IOM) report, we have the HHS Action Plan for the Prevention, Care & Treatment of Viral Hepatitis that was introduced last May. Planning and process is currently being written around the plan. People are in place and they are working hard, but the system and its processes are huge, complicated, and slow moving. It is certainly not a perfect system, but we can all contribute at some level to make this an issue important to those that do drive policy, and ultimately fund programs.
Where do you fit in? If you are in policy or public health you know you have a big job ahead of you, but it is essential that you keep looking for ways to move the system more effectively and efficiently. If you’re living with HBV, you might think you can’t make a contribution, but that is not true. This is where “arm-chair advocacy” comes in. Not everyone is going to head to D.C. to meet with their Senator or Congress person. However, you can make your voice heard. Visit your representative when she is home for constituent work week. A simpler, but equally effective alternative is to write, call, email or tweet your Representative or Senator. Let your Representative know that you are living with hepatitis B, and that you want him to support viral hepatitis legislation. Use your voice and make your vote work for those living with HBV in your state!
Please take look at this video on HBV discrimination in China. This isn’t a new story for China, rather an ongoing problem. Despite the high numbers of HBV infected persons living in China, discrimination is rampant. One in ten Chinese carry the hepatitis B virus. The range of HBV discrimination in China is vast. Life changing opportunities are lost due to rejection: rejection from school, lost employment opportunities, and even lost love, all due to HBV carrier status. Even simple, every-day routines like meals with friends and family are impacted. Many of those infected are expected to eat separately, or carry their own bowl and chopsticks. This is due to widespread ignorance on how HBV is transmitted.
An HBF friend told me Lei Chuang, the student in the video who was rejected from a top post-graduate University program due to his HBV status, is a very popular. Evidently he is a very visible and admired anti-HBV discrimination activist in China. Lei Chuang suspended his post-graduate studies in order to campaign against HBV discrimination. One of his on-going projects is an invitation to dine with the Chinese Premier. Every day he sends one letter to the Premier – 151 letters and counting. That takes a lot of courage.
Lu Jun is the director of the Beijing Yirenping Center. He has been actively fighting discrimination in China, along with providing education, outreach and patient counseling. His organization works tirelessly to defend the rights of those living with HBV by providing legal support for anti-discrimination lawsuits. He was also pivotal in creating the Chinese HBV internet forum, www.hbvhbv.com, creating a critical link between nearly half a million Chinese subscribers. (Keep in my that social media outlets such as facebook, twitter and Youtube are blocked in China.) Lu Jun is also a friend of the Hepatitis B Foundation, and joined us for our patient conference in June of 2008.
Having witnessed HBV discrimination in China, first-hand, I can tell you that I admire these men, and all others willing to take a stand and actively fight discrimination in their country. Not everyone is able to find their voice in this fight, so the sacrifice of these individuals is to be commended. However, whether outwardly speaking out or quietly behind the scenes, it is imparative that we all do our part to help raise HBV awareness.
The summer before starting medical school, most of my friends traveled and had fun. But I could not.
