Join Hep B United, the National Viral Hepatitis Roundtable, NASTAD and CDC’s Division of Viral Hepatitis for a Twitter #HepChat at 2 p.m. (EST) Thursday, June 8. The chat will highlight Hepatitis Awareness Month outreach events and allow hepatitis B and C partner organizations to share their successes, challenges and lessons learned from their efforts.
Election Day is fast approaching, and while there are many important issues to ponder, don’t forget to consider the candidates’ positions on vial hepatitis and health care issues. There are 435 seats in the House of Representatives on the ballot, along with 33 senate seats. The National Viral Hepatitis Roundtable (NVHR) sent surveys to the House and Senate asking them their position on viral hepatitis funding, the Affordable Care Act, the syringe exchange ban, HHS strategic plan, and the Viral Hepatitis Testing Act. Surveys continue to be returned, but were updated October 24th to reflect new additions. To read the returned candidate responses, go to NVHR’s Candidate Survey . If you don’t see your state’s candidate included in the collection of surveys, contact the candidate, educate them on viral hepatitis issues, and personalize the cause if you are able. If you need help, contact Ryan Clary, Director or Programs, and ask him about your Congressional candidate’s position on viral hepatitis prevention and treatment efforts, and what you might do to help the cause. Be sure to get out there and vote – Tuesday, November 6th.
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
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.
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!
