Health Care Reform Bill

Action needed:

Debate Begins Today

Help We Need!

• Allows states the option to immediately provide Medicaid coverage to people living with HIV who have not yet become disabled by AIDS (Early Treatment for HIV Act)
• Allows AIDS Drug Assistance Program (ADAP) expenditures to count towards True Out-of-Pocket expenses in the Medicare Part D program.
• A strong public insurance option
• Medicaid coverage for individuals and families with income up to the 150% of the federal poverty level
• Prohibition against discrimination based on health status in the private insurance market
• Subsidies and limits on how much a person has to pay out-of-pocket to help keep health insurance affordable
• Ends the Medicare Part D Òdonut holeÓ
• Investments to strengthen the clinical workforce, address prevention and wellness, and reduce health disparities
• Reforms of the private insurance market to better protect consumers

We canÕt wait any longer.

The House must pass H.R. 3962 so we can move even further toward a final bill to be signed by President Obama. Opponents of true health reform are weighing in daily and we must demonstrate that the majority of Americans want this bill. Please take a few minutes to do your part and call or email your House Representative and urge him/her to vote YES on H.R. 3962.

Urgent Health Care Reform Alert

Tell your Senators & Representatives in Congress:

• Health care reform must include expanded access to Medicaid for all low-income people!
  
  
• Passing ETHA is a critical part of health care reform for people living with HIV/AIDS!
  
  
• Health care reform must include a public insurance option to ensure access to meaningful care for people with HIV/AIDS!
  
  

Liver Transplants in HIV
and viral hepatitis co-infection

Liver transplantsÊin people with HIV and co-infection with viral hepatitis (HCV or HBV) is the topic of an article in www.aidsmeds.com. Infection with chronic viral hepatitis is a serious problem for people infected with HIV, as well as those infected with more than one type of chronic viral hepatitis. Although Schering-Plough's PegIntron and ribavirin were recently approved by the FDA to re-treat HCV infection (it doesn't always go away after the first 48 week course of treatment), there just is not anything else available right now besides peginterferon and ribavirin to treat HCV. Liver transplantation sometimes becomes the only treatment option.

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New TB drug shows promise

If an important scientific conference is taking place anywhere around the world, NATAP is probably covering it. The NATAP website, run by the legendary Jules Levin, is sure to have dozens of reports and actual presentations from among the hundreds they review. NATAP reports on the study of a TB drug that has the potential of saving millions of lives if it makes it through the study process.

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Is Fuzeon Over?

www.hivandhepatitis.com Ê- without question one of the best websites on both HIV and chronic viral hepatitis such as Hepatitis C (HCV) and Hepatitis B (HBV) on the Internet - published an article by Ronald Baker, PhD, describing Isentress (raltegravir) as a substitute for Fuzeon (enfuvirtide). For obvious reasons, including Isentress is not a twice daily injection; Isentress is less expensive; Isentress is covered by more payors; and Isentress doesn't cause injection site reactions make the results welcome news. Whether someone currently taking Fuzeon should switch to Isentress is still a decision that must be made with your health care provider(s). For example, some people taking Fuzeon may already have resistance to Isentress.

www.hivandhepatitis.com provides the following reference for the study:ÊW Towner, D Klein, HL Kerrigan, and others. Virologic Outcomes of Changing Enfuvirtide to Raltegravir in HIV-1 Patients Well Controlled on an Enfuvirtide Based Regimen: 24-Week Results of the CHEER Study Journal of Acquired Immune Deficiency Syndromes. May 28, 2009 [Epub ahead of print]. This is not the first study to suggest that Isentress may be a better option than Fuzeon.

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And Now for Something Really Exciting

The subtitle for the article written by Liz Highleyman - without doubt one of the best writers of information on HIV and chronic viral hepatitis anywhere - could just as easily have been "Harm Reduction Works" or "Housing Works" or "Researchers stumble on effective HIV treatment and prevention strategy". You can view the scientific paper that Liz discusses, and we are sure people will do so at some point, but she lets us in on all the major points in her article, also at www.hivandhepatitis.com. The name of the article is:ÊLower Average Community Viral Load Reduces HIV Transmission Risk despite Unprotected Sex and Needle-sharing.

"If our findings are confirmed, outreach strategies could be used to improve access to HAART among this population in an effort to reduce the HIV incidence," they elaborated in their discussion. "These data should prompt a re-examination of arguments that dichotomize HIV prevention and HIV treatment, as they might not be independent strategies to reduce the rate of new HIV infections."

Liz Highleyman's article is found here. The cited reference isÊE Wood, T Kerr, B Marshall, and others. Longitudinal community plasma HIV-1 RNA concentrations and incidence of HIV-1 among injecting drug users: prospective cohort study. British Medical Journal 338: b1649. April 30, 2009.

Actually, Housing Does Work

Studies have shown that providing housing for poor people living with HIV/AIDS dramatically improves health outcomes. Funding for AIDS housing remains illogically flat considering that stable housing has been shown to decrease both sex and drug risk taking behavior, and in a recent study halved the number of home nursing services that typically cost over $400 a day.

While researchers debate whether statistical significance is attained in individual housing intervention research studies, an analysis of a growing number of studies - including, to be sure, some retrospective reviews of charts and cohorts - suggest that housing reduces health care costs. Some would strongly argue that community based support services such as mental health and substance abuse counseling - and much needed safe spaces for repeatedly and violently physically, sexually and psychologically abused women of all ages as well as young and older gay men - is what drives how much money can be saved as well as how many different factors that create homelessness are effectively addressed using a "home" service delivery model.

Stable housing also appears to increase treatment adherence, thereby reducing the overall HIV viral load and associated STDs which increase the likelihood that diseases continue to be spread, typically unwittingly. We have the tools and several strategies to treat and prevent many diseases, including sexually transmitted diseases - and most definitely HIV.

ADAP as TRooP

"ADAPs provide access to critical medications for approximately 140,000 individuals in communities across the U.S. every year. When ADAP does not count toward TrOOP (the donut hole or coverage gap), it requires ongoing ADAP spending that cannot be used to help other needy people with HIV/AIDS. However, when ADAP does count toward TrOOP, catastrophic coverage frees up ADAP dollars to help other needy individuals. The National Alliance of State and Territorial AIDS Directors (NASTAD) has estimated that if ADAP expenditures counted towards TrOOP, it would save ADAP programs $25 to $44 million.

Action Alert - Your Help Needed

Strengthening Medicaid and Expanding Coverage for Pre-Disabled, Low-Income HIV Positive Individuals through Early Treatment for HIV Act (ETHA) are Top Health Care Reform Priorities

Two of our most important health care reform priorities:

1. Eliminating the Medicaid disability requirement and ensuring that all low income people have early access to affordable, quality care through Medicaid.
   
   
   • This will give approximately 42% of all people living with HIV who are currently uninsured immediate access to health care through Medicaid.
   
   
   • Yet, there are increasing signs that important members of Congress are backpedaling on this important goal by excluding childless adults.
   
   
2. Expanding access to Medicaid for higher income people living with HIV by having Early Treatment for HIV Act (ETHA) language included in health care reform.


• This will give states the option to expand coverage for people living with HIV and AIDS, reaching more than 75% who are currently uninsured.


• Yet, there are strong indications that Congress may not include this provision in health care reform.

Over the next 2 months we need help! You can help!

This is a crisis situation that demands immediate attention and increased advocacy. We are losing ground on accomplishing our goal of expanding early health care access to all low income people with HIV through Medicaid. Medicaid expansion must cover both families and single individuals who have no children.

The lives of hundreds of thousands of people living with HIV depend on early health care access. Please help! We need people to be on Capitol Hill on a regular basis talking to Congressional leaders and members about our top legislative priorities. If that doesn't sound like how you could best help, there are other things to do that are just as important!

To offer assistance or for more information, contact Laura Hanen, of the National Alliance of State and Territorial AIDS Directors, at 202.434.8091, or Robert Greenwald, of the Treatment Access Expansion Project, at 617.390.2584. Or just join in on a community health care reform conference call (described on the right of this page). Here is a website that is keeping track of the effort. It contains information you can print and distribute, or read online.

Health Care Reform Principles

Ten ways Congress can dramatically improve access to affordable, quality, and comprehensive health care for persons living with HIV/AIDS in the United States:

1. Provide Medicaid to all uninsured individuals with income less than $20,000 per year and families of four with income less than $42,000 per year, and allow states to provide Medicaid coverage for persons with HIV with even higher income, as proposed in the Early Treatment for HIV Act ("ETHA").


2. Ensure access to quality health care by establishing a comprehensive, standard Medicaid benefits package that is available in every state.


3. Keep Medicaid and Medicare health care services and prescriptions affordable for everyone by minimizing consumers' out-of-pocket costs.


4. Increase the federal contribution to state Medicaid programs during periods of economic crisis.


5. To help fight the HIV epidemic, voluntary HIV testing and counseling should be available to everyone. Medicaid, Medicare and private insurance companies should be required to cover voluntary HIV testing and counseling.


6. Improve access to health care by eliminating the two-year Medicare waiting period for people with disabilities.


7. Protect Medicare beneficiaries facing "donut hole" coverage gaps.


8. Provide incentives to strengthen the health care work force and ensure adequate and timely reimbursement to health care providers to help promote and protect access to the vital services they provide.


9. Expand and improve private health insurance options by guaranteeing that everyone has access to an affordable, comprehensive, quality private health insurance plan.


10. Support and strengthen Ryan White Programs so that they continue to provide essential health and support services to people living with HIV and AIDS.

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    This report was prepared by staff of the WilmerHale Legal Services Center of Harvard Law School and the Treatment Access Expansion Project for the HIV Health Care Access Working Group (HHCAWG). The Working Group is a coalition of nearly 100 national and community-based AIDS service organizations representing HIV medical providers, advocates and people living with HIV/AIDS and providing critical HIV-related health care and support services. For more information, contact co-chairs Laura Hanen, of the National Alliance of State and Territorial AIDS Directors, at 202.434.8091, or Robert Greenwald, of the Treatment Access Expansion Project, at 617.390.2584.

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    Tribe Marmotini Prediction

    Let's hope Phil is in a good mood today and we don't have too much more winter weather to deal with. This year might require a consensus of Ground Hogs. Update: A member of the Tribe Marmotini, Phil had to be dragged out of a box for today's performance. He augured six more weeks of Winter are in store for us. Have you all gotten your flu shots? Some of us really wish we had. Kinda like finding out where the nearest HRSA sponsored pay what you can afford health clinic is located before you are sick. Yeah, they do preventive and dental, so check it out.

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    Over 18 and Homeless?

    Advocates claim denial of services to straight and LGBT young adults, and host a townhall meeting on Wednesday, March 11th at 6:30pm at 208 West 13th St. According to a press release, "Although New York State policy allows long-term shelter access to homeless adults over 18 years of age, countless homeless young adults over 18 are being denied this right. They have been told they are "too young" and have been sent to youth agencies that can only offer short term shelter."

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    Request Assistance Update

    The Network (ATDN) is a community-based organization located in New York City, where we provide direct case management services to New Yorkers with HIV and HIV/Hepatitis co-infection. We also have a national assistance program called The Access Project that serves people with HIV, chronic hepatitis C, Hepatitis B, and other diseases. Check with your state's webpage for phone numbers and links to a wide range of resources. Use the Request Assistance form or leave a message at 1-800-734-7104, extension 22. Using Request Assistance form will get you the fastest response.

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    National Black History Month

    The Black AIDS Institute released The State of AIDS in Black America 2009 report. Our friends at LIFEbeat, an organization dedicated to reaching America's youth with the message of HIV/AIDS prevention, have links to the day's website. LIFEbeat mobilizes the talents and resources of the music industry to raise awareness and to provide support to the AIDS community.

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    Monday, January 19, 2009 we celebrate Martin Luther King Jr.'s birthday. That day and every day can be a day of service to each other and to our country. Click the picture for more information.

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    On Tuesday, January 20, 2009 Barack Obama was inaugurated as the next President of the United States of America. President Obama is the 44th President of the United States.

    Urgent Action Required

    January 21, 2009 The number of people who die from liver disease, with or without HIV co-infection is staggering. It doesn't have to be inevitable, but we will continue to lose our leaders and our advocates and our friends and families and hundreds of millions of people who we have never even met unless we do something about it. We have an opportunity to start now, joining a growing number of viral hepatitis advocates who need our support - including many who have fought for people with HIV and AIDS for years. Attached is a letter organizations throughout the country are asked to sign onto. Please pass it on or contact your elected representatives - especially your senators. We can't stand by and do nothing while we lose more family or friends - or another hero. post January 21, 2009

    Governor David A. Paterson sent a letter to President-elect Obama and Vice President-elect Biden offering an agenda for federal aid to states. Governor Paterson joined Governors Deval Patrick (Mass.), Jennifer Granholm (Mich.), Jon Corzine (N.J.), Ted Strickland (Ohio) and Jim Doyle (Wis.) in praising the President-elect for heeding the public's call for action, and his proposal for a comprehensive economic recovery package.

    HIV Prevention Programs - New Programs Added to the CDC's list. Health care access for all residents of the United States is still be the most profound and lasting - not to mention job creating and cost reducing - prevention program for hundreds of diseases the people in this country deal with as they live their lives. Let's decide to prevent and treat them all in 2009.

    Effective Hepatitis C Treatment? - Peginterferon (Pegasys, Peg Intron) taken without the drug ribavirin, even for well over a year, does not work as "maintenance therapy" for people with Hepatitis C who did not respond to the approved combination of ribavirin and peginterferon. Peginterferon when taken with ribavirin works in other situations - sometimes eliminating the virus - but peginterferon taken without ribavirin as "maintenance therapy" produced no clinical benefits. The lead investigator of the HALT-C study suggests that anyone using peginterferon in this manner should stop doing so. Overall, about 50% of people with chronic hepatitis C who take pegylated interferon and ribavirin have a sustained virological response (SVR). The success rate can vary based on the HCV genotype, with genotypes 1 and 4 having a lower success rate than genotypes 2 or 3. There are many new drug combinations being studied for HCV treatment. They will hopefully provide new treatment options for people with chronic HCV, including people with HIV/HCV co-infection and people who have not responded to previous therapy.

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    Urgent Action Required

    This is extremely important to the fiscal stability of State and County governments across the United States. We need to support Main Street as much as we need to solve the fiscal problems of Wall Street. Support Main Street and include FMAP in the bailout/stimulus bill.
    
    Medicaid Relief in Economic Stimulus Package
    

    • Provides fiscal relief to all States,and local governments who have a share in Medicaid expenditures with their States,and territories through a temporary increase of Federal Medicaid funding through the Federal Medical Assistance Percentage (FMAP) for fiscal year 2009
    
    
    • Provides relief to all States and local governments who have a share in Medicaid expenditures with their States,and territories but targets more relief to States in greater economic distress as measured through three factors: the State employment data,foreclosure rates,and food stamps
    
    
    • Exempts extraordinary employer pension contributions from the calculation of personal income for the purposes of establishing a State' s Federal medical assistance percentage. Although we will continue to fight for an appropriate Stimulus Package in the future, calling your Senators and supporting Senate Bill (S.3656) - the PATH Act is crucial for you to do today.
    
    

    Effective Hepatitis C Treatment? Peginterferon (Pegasys, Peg Intron) taken without the drug ribavirin, even for well over a year, does not work as "maintenance therapy" for people with Hepatitis C who did not respond to the approved combination of ribavirin and peginterferon. Peginterferon when taken with ribavirin works in other situations - sometimes eliminating the virus - but peginterferon taken without ribavirin as "maintenance therapy" produced no clinical benefits. The lead investigator of the HALT-C study suggests that anyone using peginterferon in this manner should stop doing so. Overall, about 50% of people with chronic hepatitis C who take pegylated interferon and ribavirin have a sustained virological response (SVR). The success rate can vary based on the HCV genotype, with genotypes 1 and 4 having a lower success rate than genotypes 2 or 3. There are many new drug combinations being studied for HCV treatment. They will hopefully provide new treatment options for people with chronic HCV, including people with HIV/HCV co-infection and people who have not responded to previous therapy.

    Tibotec announces request for Treatment Education Proposals. This is a special initiative. Like many other pharmaceutical companies, Tibotec also has an online mechanism for applying for other types of grants and sponsorship as well.

    Medicare Part D Open Enrollment and Other Programs - It is open enrollment time for Medicare Part D. This is the way that many people in the United States get their prescription drugs paid for. You have to be careful to choose a plan that is right for you and your condition. If you hve chronic hepatitis B or chronic hepatitis C, for example, make sure that everything that you might need is covered under the plan you choose. There is a government website that lists every plan that you could get (depending on your income or your age, you may be eligible for special no or very low cost plans) and what drugs must be covered by every plan.
    
    It is very important to ask as many questions as you think of about the different plans. If you have HIV, for example, you want to make sure you pick a plan that you can afford, and which covers the medications you take. It's also very important to pick a plan that does not have a prescription drug coverage cap - in other words, you should try to avoid a plan that caps your HIV medications out at $2500 a year. If you choose such a plan you would probably be stuck paying the best price you could find for your medications. It's better to plan now then ending up stopping your meds because you can't afford to pay for them. There are very few generic drugs for the treatment of HIV or hepatitis at this point in time, so don't be overly impressed by a plan that offers no co-payment or a low premium. Speak with one or more people you trust who have your best interests at heart.
    
    If you are very low income the government does provide plans that charge you nothing or very little. If you are eligible for Medicaid, for example, you can probably find a plan that provides you with no cost coverage. But you need a good Case Manager or benefits counselor to assist you unless you feel comfortable negotiating the information and discussions yourself.

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    Maraviroc Information

    Pfizer's re-evaluation of the MERIT study using the new enhanced Trofile assay

    November 2008 FDA Approved Selzentry (maraviroc) label

    Full Prescribing Information is available at www.selzentry.com

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    ADAP Report 2008 Summary - The 2008 National ADAP Monitoring Project Annual Report provides the latest data on state AIDS Drug Assistance Programs (ADAPs). Sign on letter to Speaker Nancy Pelosi to urge support of ADAP coverage of the Medicare Part D "donut" hole (TrOOP), and the Clinton/Smith Early Treatment for HIV Act. Please sign on with Kali Lindsey at klindsey@taepusa.org

North American AIDS Housing Summit

New York Congressman Jerrold Nadler Press Conference
North American AIDS Housing Summit

New York Congressman Jerrold Nadler held a press conference to announce the introduction of a Congressional resolution establishing the critical role of housing in fighting HIV and AIDS. The press conference was the unofficial kickoff of a three-day international AIDS Housing summit, featuring appearances by White House AIDS chief Jeffrey Crowley and renowned humanitarian Stephen Lewis.

Many studies have shown that providing housing for poor people living with HIV/AIDS dramatically improves health outcomes. If that doesn't register as a common sense cause and effect description then you're not up-to-date on what drives both homelessness and HIV in the United States (and in just about every other country in the world as well); yet, funding for AIDS housing remains illogically flat considering that stable housing has been shown to decrease both sex and drug risk taking behavior, and in a recent study halved the number of home nursing services that typically cost about $400 a day.

While researchers debate whether statistical significance is attained in individual housing intervention research studies, an analysis of a growing number of studies - including, to be sure, some retrospective reviews of charts and cohorts - do suggest that housing can reduce health care costs. Some would strongly argue that community based support services such as mental health and substance abuse counseling - and much needed safe spaces for repeatedly and violently physically, sexually and psychologically abused women of all ages as well as young and older gay men - is what drives how much money can be saved as well as how many different factors that create homelessness are effectively addressed using a "home" service delivery model.

Stable housing also appears to increase treatment adherence, thereby reducing the overall HIV viral load and associated STDs which increase the likelihood that diseases continue to be spread, typically unwittingly. We have the tools and several strategies to treat and prevent many diseases, including sexually transmitted diseases - and most definitely HIV.

The US approach has typically been to offer some sort of moral prescription, or at least some mumbling about how being poor or homeless or having HIV is the result of making bad choices from among several good options - instead of prevention education and discussion of what life is actually like living with HIV.

Nineandahalfminutes.org

For information on the 9 1/2 Minutes campaign of Act Against AIDS, including what you can do to help end the HIV/AIDS epidemic, and tools you can use to spread the word and participate, please visit www.nineandahalfminutes.org

Participate Tuesday, April 14, 2009 from 2:30 to 3:30 pm EDT. Participants should dial: 1-800-288-8976.ÊWhen prompted, please provide the title of the call, "Act Against AIDS Campaign." To ensure an adequate number of phone lines for the briefing, registration is strongly encouraged by 12:00 pm EDT (noon) on Monday, April13. To confirm participation, send an email to info@cdcnpin.org. Please enter "Act Against AIDS Campaign" in the subject line of your email. In addition, you are encouraged to enter the call queue 10 minutes prior to the start of the call.

Digital playback of the telebriefing will be available from Tuesday April 14, 2009 at 5:00 pm EDT until Monday April 20, 2009 at 11:59 pm (EDT). You may access playback by dialing: 1-800-475-6701 and entering access code: 995983.

HIV Treatment Guidelines

The latest HIV Treatment Guidelines for Adults and Adolescents, as well as guidelines for the treatment and prevention of opportunistic infections are available in their latest updates at www.aidsinfo.nih.gov

The final decision about what treatment regimen would be best for you in the short term and long term is best decided upon by you and your doctor. Let us know if you are having trouble paying for HIV or chronic hepatitis treatment.

This Special Edition of the Medicaid Update of New York State highlights the reform measures advanced in this year's Budget.

2009 Federal Poverty Guidelines

The 2009 Federal Poverty Guidelines have been released to the Federal Register. These guidelines help determine eligibility for a great number of programs.

Medicaid Watch

Medicaid Watch of March 2009 has been released by Community AIDS National Network (CANN).

Medicare Part D: ADAP Coverage

Medicare Part D:
ADAP Expenditures Must Count Towards TrOOP
What is the Issue? When Congress established the Medicare Part D program, drug spending by other government programs was prohibited from counting toward the calculation of so-called true out-of-pocket costs (TrOOP), with one exception, state pharmaceutical assistance programs. The Centers for Medicare and Medicaid Services (CMS) has interpreted the law such that AIDS Drug Assistance Programs (ADAPs) are not to be considered state pharmaceutical assistance programs even though they are supported by significant state contributions and must ensure that they are the payer of last resort.

How does it affect people living with HIV/AIDS? TrOOP spending is a critical issue because it determines when "catastrophic coverage" begins. Catastrophic coverage begins when individuals with exceptionally high drug costs move through the coverage gap by spending $4,050 in out-of-pocket costs and their cost sharing falls to 5% of drug costs. TrOOP also is significant because these expenses are used to determine when individuals exit the coverage gap known as the donut hole. Because ADAP spending does not count toward TrOOP, individuals can not move out of the coverage gap and are therefore unable to access their Medicare drug formularies for approximately between 9 to 10 months out of the plan year. These individuals must rely only on ADAP, which in almost all cases has a much more limited formulary than the typical Medicare plan.

Reasons to Support Policy Change:

• Cost to Medicare is Minimal: The CHAMP Act passed by the House last session included a provision to allow ADAP and Indian Health Service spending to count towards TrOOP. Those two programs combined were only expected to cost $100 million over five years.

• States Make Significant Contributions to ADAPs: On average, state spending accounts for 21% of the total ADAP budget. Fifteen states contribute more than 25% of their state's overall ADAP budget (Alabama, California, Colorado, Georgia, Idaho, Illinois, Kansas, Montana, Nebraska, North Carolina, Pennsylvania, Tennessee, Texas, Washington and Wyoming) and three states contribute 40% or more of the ADAP budget (Idaho, Nebraska, and Wyoming).

• Provide Cost Savings to Lifesaving Discretionarily Funded Program: Total ADAP spending reached over $1.4 billion in FY2007, with states contributing $294 million to the total. ADAPs provide access to critical medications for approximately 140,000 individuals in communities across the U.S. every year. Unfortunately, ADAPs are limited in their services by the annual appropriations process and meeting demand for HIV drugs is an ongoing challenge. A number of states have been forced to maintain waiting lists over the last several years.

• Catastrophic Coverage Frees Up ADAP to Cover Other Unmet Needs: When ADAP does not count toward TrOOP, it requires ongoing ADAP spending that cannot be used to help other needy people with HIV/AIDS. However, when ADAP does count toward TrOOP, catastrophic coverage frees up ADAP dollars to help other needy individuals. The National Alliance of State and Territorial AIDS Directors has estimated that if ADAP expenditures counted towards TrOOP, it would save ADAP programs $25 to $44 million.

• The Majority of ADAP Clients Live in Poverty: Over 75% of ADAP clients live at or below 200% of the poverty level ($1,733 a month in 2008) and 43% are at or below 100% FPL. For those who just miss qualifying for the Medicare low income subsidy, the cost of drugs can easily total $3,000 per month during the donut hole period. In addition to their HIV regimen, people with HIV/AIDS also need to pay for a host of other medications to treat co-occurring conditions and side effects from their HIV treatment.

• On Average, 17% of ADAP Clients are Medicare Beneficiaries: 69% of these ADAP clients who are Medicare beneficiaries are also eligible for the full or partial LIS. Approximately 30% of these clients are standard beneficiaries who currently experience the coverage gap.

Viral Hepatitis (Hep C and Hep B)

HCV and HCV/HIV co-infection Group

Midtown Manhattan Hepatitis C Support Group
The meeting is today, Wednesday, May 27th, 2009 at 6:15 PM. The location is 560 1st Ave. (between 30th and 31st). Free of charge and is open to patients, friends and families from all other offices and hospitals.

The guest speaker will be Tracy Swan, Hepatitis/HIV Project Director at Treatment Action Group.
She works with other activists, people living with HIV and HCV, researchers, clinicians and industry for better HCV research and drug development, and promotes policies to broaden access to high quality care and treatment for HIV and HCV. She is an expert advisor to the US FDA and writes extensively on HIV and HCV co-infection issues.

The main entrance is at NYU Medical Center - Smilo conference room 1301. You can walk through the main entrance and ask security for directons.

This group is facilitated by our good friends Ronni Marks and Leena Hong, RPA-C. Refreshments are provided by 3 Rivers Pharmaceuticals. So please attend!

Carlos Arboleda Remembrance

On April 28th, 2009 HIV treatment advocate Carlos Arboleda passed away. He worked with GMHC, NMAC, NDRI, and POZ, and contributed his writing to POZ, Treatment Issues, ACRIA Update, and many others. A memorial forÊCarlos will take place on Tuesday, May 26 from 7:00-9:30 PM at: GMHC, 119 West 24th Street, 11th floor i New York City. Please join HernanÊArboleda and Carlos' friends and colleagues in honoring Carlos' memory and celebrating his life. Feel free to share stories about Carlos and bring photos or other mementos. Please tellÊanyone who knew Carlos about the memorial.ÊIf Êyou can, e-mail Jill Cadman at jacadman@optonline.net if you will attend so she can let GMHC know how many people to expect.Ê(from Donna Kaminski)

"God gave us power to make smart decisions, to cure diseases, to alleviate suffering" - President Barack Obama

Hepatitis C Book

It's called Hepatitis C Choices . This is the 4th edition. The 3rd edition was great. The 4th is a learning and counseling experience you won't soon forget. In fact, before you even start the book you might want to orient yourself to the whole idea of being HCV positive. It's called Hep C Discussion Point. You get very helpful responses to the questions you need answered.

End the 2 Year Waiting Period!

The Medicare Rights Center and over one hundred other organizations nationwide are trying to put an end to a dangerous two year waiting period before people on disability can get Medicare. "Nearly 7 million Americans under age 65 qualify for Medicare due to severe and permanent disabilities. However, their coverage doesnÕt begin immediately or automatically when they first become disabled.

The law states that they must wait two full years from the date their Social Security Disability Insurance begins before they can receive Medicare. This 24-month waiting period exposes millions to financial hardship, pain and suffering.

According to a 2003 study by the Commonwealth Fund, as many as one-third of those in the waiting period may be uninsured or have inadequate insurance coverage. By the time they obtain Medicare coverage, 77 percent are poor or nearly poor. Close to half have incomes below the poverty line. After qualifying for Social Security Disability Income (SSDI), nearly 12 percent of individuals die while still in the Medicare waiting period.

Congress has already acknowledged that the 24-month waiting period can be a death sentence for people with specific diseasesÑit has already eliminated the waiting period for people with amyotrophic lateral sclerosis (Lou GehrigÕs disease) and for end-stage renal disease (ESRD) for which a lack of treatment is fatal. Now itÕs time for Congress to eliminate the 24-month waiting period for all other people with disabilities."

Hepatitis B Treatment

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facebook

Jack Waters is a long time friend and serves on the Board of Directors of The Network. He even started a Facebook Cause for The Network.

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Information and Advocacy, and Education have been updated. A September 10th Event in New York City: The Fight for a National AIDS Strategy and the Presidential Candidates' Positions on the Domestic AIDS Crisis has been added as well.

North Carolina ADAP Financial Eligibility Increase to 300%, effective October 1, 2008. For a complete description of the program and what is covered check out this new document

New York Senators Hillary Clinton and Charles Shumer have written a letter to the current President of the United States urging him to stop disastrous cuts to health care services to the people of New York State. Every other state in the country will be affected as well. If you receive your health care and support services (such as primary care, renal care, mental health day services, family planning services, psychiatric rehabilitation, methadone clinic, developmental disability clinic) through a community clinic or a hospital out-patient clinic it is likely that you won't be able to anymore. The states of Maryland, Michigan, Missouri, New Jersey, Alaska, Illinois, Oklahoma, Pennsylvania, South Dakota, Tennessee, Utah, Connecticut, Vermont, Washington, Wisconsin have already let the HHS know of the incredibly negative effect this CMS rule will have.

Updates to Patient Assistance Programs for Hepatitis Treatments, HIV Treatments, and Other Treatments. If you want to see links for specific drugs not included, let us know . We have had a 600% increase in people with (and without) insurance requesting assistance accessing treatments and care in the last two months alone. Please use the above form to do so.

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New York State HIV Care Network contacts have been updated. People with HIV/AIDS and/or chronic hepatitis in New York City and surrounding areas are invited to seek Case Management Services to access and stay in care and on the treatments prescribed by their doctors. Call 1-800-734-7104 or e-mail network@atdn.org with Case Management in the subject line.

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Viread has been approved by the FDA for the treatment of chronic Hepatitis B. The FDA has recommended that Hepsera be used with Epivir-HB following the results of a 144 week study.

Our good friends at Treatment Action Group (TAG) have released, The 2008 Pipeline Report: HIV, Tuberculosis, Hepatitis B, and Hepatitis C Drugs, Diagnostics, Vaccines, and Microbicides in Development. It's available in PDF format. (503 KB)

Remember that an Request Information form will get you any information by e-mail. Since posting the form hundreds of people have asked for help from all over the country. Please provide as much background as possible, espcially about any current insurance coverage, your income (household) and anything else you believe will help. Pages describing Case Management services have also been updated, including our New York City based community case management program.

In addition, Education and Information has been updated. If you know of or are sponsoring educational or informational events let is know and we'll list them. Health and Advocacy has also been updated.

Now each and every one of us needs to make sure that all of our elected officials know what our needs are. Call them, write them, e-mail them or visit them in Washington DC or in their homes offices in your CD (Congressional District). That goes for all the elected officials in your state as well. We are only going to be able to solve our problems together. Don't be shy. It's your government. Participate Enter your Zip Code to find your officials

Federally-funded health centers care for you, even if you have no health insurance. You pay what you can afford, based on your income. Contact the health center you find using your Zip Code. According to HRSA, here are some of the services you should be able to access

• Checkups when you're well
• Treatment when you're sick
• Complete care when you're pregnant
• Immunizations and checkups for your children
• Dental care and prescription drugs for your family
• Mental health and substance abuse care if you need it

If you haven't gotten a flu shot yet, you should. There is not a shortage of flu vaccinations. Speak with your doctor about when you can receive one, or contact a local clinic or health center and inquire whether free or low cost flu shots are available. If you haven't been tested for Hepatitis C (HCV), Hepatitis B (HBV), or HIV you could probably do that at the same time.

To check out ongoing advocacy efforts visit Project Inform's website. Hepatitis C Advocates UNITED ! is a national, grassroots network of individuals and organizations fighting for increased funding for hepatitis programs and legislation to mount a comprehensive federal effort to fight the disease. To join HCAU, send an email to Ryan Clary with subjectin the subject field. Please include your name and city/state in the email.

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Hepatitis C Activists take note: Hepatitis C Advocates UNITED! is a national, grassroots network of individuals and organizations fighting for increased funding for hepatitis programs and legislation to mount a comprehensive federal effort to fight the disease. Be a part of this movement! To join Hepatitis C Advocates UNITED!, send an email to . In the email, put your first name (and last name, if you are comfortable) and city/state. We will communicate through a moderated listserv and monthly conference calls.

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The February edition of Medicaid Watch is now available.

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The Fair Pricing Coalition issued a press release regarding stunning price increases of HIV medications manufactured by Bristol-Myers Squibb

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The January 2008 version of Medicaid Watch is now available for download in PDF format.

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New HIV Treatment Guidelines have been released, along with Fact Sheets in English and Spanish.

An important article was published in Hepatology, Vol.46, No.6, 2007 that highlights a meeting of the Antiviral Products Advisory Committee that discussed the development and approval of treatments for hepatitis C (HCV). Full transcripts of the meeting are available to the public.

Find out all about advocacy and activism on Ryan White/ADAP, Medicaid and ETHA and a new group, Hep C Advocates UNITED ! at the newly redesigned website of Project Inform . The December 2007 version of Medicaid Watch is now available for download in PDF format. The first ever integrase inhibitor for the treatment of HIV disease was approved.

Monogram Biosciences and Pfizer, the makers of the newly approved drug Selzentry (maraviroc), released the results of tests that showed that the Trofile assay is much more reliable and specific than the SensiTrop assay. Until further studies are conducted Pfizer suggests that the Trofile test be used to determine CCR5 tropism if you are considering taking the drug Selzentry. Contact The Network if you need more information about this important information.

The drug fosamprenavir (Lexiva) was approved as a once a day treatment for protease inhibitor naive individuals. Ritonavir (100mg) is taken with 1400 mg fosamprenavir. Discuss all treatment options and decisions with qualified medical professionals who know your health history.

States are continually being updated with information on HIV and Hepatitis services and treatments through The Access Project. Some recently updated states include Hawaii , Kentucky , Washington , Rhode Island, Oregon, and Alabama .

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Town Hall Meeting with Congressman Ed Towns (NY-10)

Health Care Reform Town Hall Meeting
Saturday, May 9th 2009 10am - 1pm
St Francis College, 180 Remsen St (Court/Clinton) Auditorium

Congressman Towns welcomes your views about health care reform. Rep. Towns supports President Obama's plan to reform our system of health care this year with a Town Hall meeting to get critical stakeholder input. We invite Brooklyn residents, businesses, providers, and federal, state and local government representitives to share your views on targeted panels. We particularly need to hear from people who lack health insurance, have trouble finding quality and affordable health care, or have experienced problems with Medicaid or Medicare. "In 2005, over 300,000 Kings County residents lacked health insurance. This is unacceptable! Health care reform has to happen now, because it is critical for Brooklyn and the nation, escpecially during this economic downturn," according to Representative Towns.

Please plan to attend and share your views with Rep. Towns Please RSVP to be a speaker. Contact Edna Johnson or Karen Cherry for more information (718) 855-8018.

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