Economic Recovery Emergency

Last week the House of Representatives passed an economic stimulus bill that includes recognition of the fact that states are in serious trouble, and money is needed to preserve the structures that enable states to exist. Employment opportunities in health care, education or infrastructure building and repair - all of which are associated with even more, other new jobs - are a major part of, and reason for this economic stimulus.

Yet there are those in the Senate who feel that a $400 million dollar part of the bill that supports HIV and sexually transmitted disease prevention will create neither jobs nor economic stimulus. Besides the fact that sexually transmitted diseases put a very large financial burden on all levels of the government, they also increase the cost of health care. So it is crucial that we all contact our Senators to let them know how we feel about the many jobs and multiple benefits that including STD and HIV prevention in the Economic Recover Bill will create.

The US Senate will begin debate on today on the Economic Recovery Bill. Some Senators are unclear that their constituents and Americans overwhelmingly support President Obama's efforts to lead us out of the financial nightmare we have been left to deal with. Creating jobs that actually prevent future costs, as well as save lives would seem to be a priority to any Senator - as they are to the people who live in this country.

But that's where you need to let them know what you want. The Center for Disease Control and Prevention's National Center for HIV/AIDS, Viral Hepatitis, STDs, and TB Prevention addresses the four most common infectious diseases in the U.S. Call The White House comments line at 1-(202)-456-1414 and your Senators at 1-(202) 224-3121 and ask them to maintain the $400 million funding for HIV, STD, TB, and Viral Hepatitis Prevention! Call now and continue to call until Wednesday, February 4th.

If you do not know who your representatives are go to capwiz.com You can also reach your Senators by dialing 1-(202)-224-3121 and asking for them by name.

Why Now?

Why Invest in HIV, Viral Hepatitis, STD and TB prevention? The funds for HIV, viral hepatitis, STDs and TB will create jobs, strengthen health infrastructure, and address an urgent health threat. In discussing the stimulus bill, President Obama has continually stated that the country must shore up and improve its infrastructure. The infrastructure of our public health system, particularly the public health workforce must not be ignored in these discussions.

The money in the Economic Recovery Bill would be used to prevent some of the most common, costly, and controllable infectious diseases - HIV, viral hepatitis, STDs and TB. Every year, 19 million Americans become infected with STDs. The funds included in the stimulus would directly be responsible for creating jobs, modernizing healthcare infrastructure and reducing unnecessary healthcare costs. Please call The White House and your Senators.

Trouble Paying for Treatment?

Session 1 - A growing number of people do not take their prescribed medications because they cannot afford them, even though they have insurance. There are ways to increase your ability to afford what your health care provider has prescribed. This is the first in a weekly series of descriptions of types of programs, with specific examples chosen based on the actual requests we receive. (HIV-positive people who live in Brooklyn, The Bronx, Queens, Staten Island or Manhattan who are enrolled in our Case Management program receive treatment and care access support and advocacy regardless of insurance coverage).

Pharmaceutical companies almost always have a Patient Assistance Program for the drugs they make. Eligibility varies, usually based on your income and existing benefits. You apply, they let you know if they can help. Some companies now also assist eligible individuals with co-payments or out of pocket expenses. For example, Gilead and GlaxoSmithKline, have new access options for their HIV drugs. Gilead has a program specifically for people who are having trouble paying for Truvada - a combination of their two drugs Viread and Emtriva. It is possible to get co-payment assistance through this program.

GlaxoSmithKline also has a new program that provides eligible individuals with up to $100 off a month for each HIV drug they make. For patient assistance programs for other HIV drugs check here. As always, having a case manager assist you to coordinate your needs is recommended, regardless of whether you have private insurance, Medicaid, Medicare or no coverage at all.

The Network (ATDN) is a national, not for profit organization that provides case management, treatment and care access education and information, advocacy and counseling, and other services for people with chronic hepatitis, AIDS, and HIV/Hepatitis co-infection. There is no fee, charge or donation required to receive our services.

We accept and appreciate donations of any amount, but a contribution is not required to receive our services. Many of our services are provided by volunteers, so please fill out the Request Information Form first for help getting drugs or services. Please include your zip code and/or city and state. Names and return phone numbers are also very helpful. Income isvery helpful, including any benefits you already receive so we can find programs you are eligible for easier. If you are unable to e-mail us for any reason, our national toll-free number is 1-(800) 734-7104

People with HIV or HIV/Hepatitis co-infection who live in the New York City area (all boroughs as well as surrounding areas and parts of New Jersey) can enroll in our no fee, no insurance required case management program.

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

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.

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.

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.

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.

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

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

We celebrate our 20th Anniversary all year until October 6, 2009. Our crucial health care access and coverage services always include a wide range of support services such as housing and rental assistance referrals and advocacy, treatment counseling, clinical care referrals and case management, legal referrals and other community based services. Donate twenty dollars, more if you can - less if you can't. It's all tax-deductible as we are a not-for-profit. Thanks! And if you need help, let us know.

The Network is a national, non- profit group. We provide no-fee case management, advocacy and counseling, and treatment and access information and referrals (English or Spanish) to people with AIDS/HIV, chronic hepatitis, and other diseases.

FDA has granted accelerated approval for a new anti-HIV drug. The drug, Intelence (also known as etravirine or TMC-125) was approved based on two trials conducted mostly in men who had very few HIV treatment options. Over 3000 people have also received the drug through an Expanded Access Program. The links below are for several press releases, including one from the FDA, Tibotec (the makers of the drug), and The Fair Pricing Coalition. The FDA approved label for the drug is included as well. In addition, there is a press release by The Fair Pricing Coalition on a stunning increase in the price of Atripla and other drugs made by BMS.

• FDA notice about Intelence approval


• The Fair Pricing Coalition commends Tibotec and parent company leadership


• Tibotec Press Release about Intelence (etravirine), including positive comments regarding Intelence pricing from The Fair Pricing Coalition


• Patient Information on Intelence (etravirine) from the FDA


• The FDA approved, entire label for Intelence (etravirine)

HIV and Hepatitis C Meeting in New York City. January 25, 2008. Please download the agenda and form to register. Limited space! Check it out now. Isentress (raltegravir) Approval

The first ever integrase inhibitor for the treatment of HIV disease, Isentress (raltegravir) was approved.

States are continually being updated with information on HIV and Hepatitis services and treatments through The Access Project.

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.

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. GSK's abacavir and Epzicom HLA-B*5701 allele findings prompt a survey study - GSK is conducting a study called TEACH (The Evaluation of Attitudes and practice patterns of HIV clinicians when Considering the use of HLA-B*5701 in clinical practice) that will document the experiences of US-based HIV clinicians using this pharmacogenetic test. Any US-based clinician may register at the study website. Discuss all treatment options and decisions with qualified medical professionals who know your health history.

The U.S. Senate will debate Medicare reform legislation. They can play a major role in fixing this problem by including the ADAP as TrOOP provision. The House of Representatives has already approved this provision. The Senate needs to hear that this is a priority for people with HIV/AIDS and a fix that is badly needed. Please, call them!

Call the Capitol Switchboard toll-free at (800) 828-0498. Ask to be connected to your Senator's office. If you don't know who your Senators are, go to www.congress.org and enter your zip code in the upper left corner. If you can't call, send an email to both of your Senators with the same message. Go to www.senate.gov to find their websites and how to email them.

Medicaid Watch April 2008 - covers state Medicaid developments, and reports on other state health assistance programs

The drug Selzentry (maraviroc) was added to New York State ADAP. It is also available through NYS Medicaid, which also covers the Trofile test that should be done before using maraviroc.

FDA has granted accelerated approval for a new anti-HIV drug. The drug is Intelence (also known as etravirine or TMC-125).

On Monday, President Bush kicked off the Fiscal Year 2009 appropriations process with the release of his budget proposal. The President's FY2009 budget flat funds the CDC Division of Viral Hepatitis (DVH). We need your help in raising awareness of Members of Congress and asking their support for increased funding for hepatitis C activities at the federal level. Hepatitis advocates are asking for $50 million for hepatitis funding, which is an increase of $32.4 million over the current funding of $17.6 million.

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 answer.

But back to the book. You can download all of the book or the individuals chapters of interest. It includes an update on state of the art treatment of HCV, and lots of very useful information on living with HCV.

There are several chapters on alternative approaches to treating HCV, including Traditional Chinese Medicine and Modern Chinese medicine. The chapters on the Immune System, Western medical treatment of HCV are exceptional. What makes the reading so compelling are the decades of caring experience treating and caring for people with HCV that comes across throughout the book.

Adult Viral Hepatitis Coordinators has a state by state listing.

Prezista (darunavir) Approval

- Traditional approval of Prezista
- New dosing regimen for treatment-naive patients
- New 400 mg tablets
- Revised Pregnancy Category

On October 21, 2008, FDA granted traditional approval to Prezista (darunavir) 600 mg, co-administered with 100 mg ritonavir and with other antiretroviral agents, for the treatment of HIV-1 infection in treatment-experienced adult patients. Prezista was granted accelerated approval on June 23, 2006, based on analysis of plasma HIV-1 RNA levels in two controlled studies of 24 weeks duration. The traditional approval is based on a 48 week phase 3 study (TMC114-C214) in treatment-experienced patients and continuation of two controlled trials of 96 weeks duration in clinically advanced, treatment-experienced patients, confirming durability of the virologic response.

In addition to the traditional approval, a new dosing regimen for treatment-naive patients was approved. The recommended dose for treatment-naive adult patients is Prezista 800 mg (two 400 mg tablets) taken with ritonavir 100 mg once daily, with food. The type of food does not affect exposure to darunavir.

The dosing regimen for treatment-experienced patients remains unchanged as Prezista 600 mg taken with ritonavir 100 mg twice daily, with food.

New York City Case Management

For HIV+ people - Confidential help of all kinds for people of all kinds. We make things work for you. No fee, charge or insurance required. E-mail us at The Network, or call our toll-free number at (800) 734-7104 for help getting housing, food, insurance or benefits assistance, treatment, care, living expenses, legal referrals and counseling. HIV+ people anywhere in the New York City area welcome to join.

• Request Assistance
• HIV Treatments
• Hepatitis Treatments
• The Access Project
• Patient Assistance Programs
• Simple Fact Sheets
• Make a Donation
• Federal poverty Guidelines

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.

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.

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)

August 11, 2008 - Since we created the Request Information post for assistance, hundreds of people have used it. Just a reminder that there is also an updated How to Use The Access Project page and The Access Project State Index . New York and Indiana and Colorado have been posted. More states and updates are being posted.

Updates in Progress - Call our 1-800-734-7104 number and get case management services if you live anywhere in New York City. Thousands of pages of information were collected by Ethan, LeRoi, Jeff and volunteers. We spent several months collecting information to be added to our website in a new format. We expect updating of the existing site will take place during February 2009. You will see all Patient Assistance Programs and treatment access programs, all states of The Access Project updated, and lots more - linked and connected in a way that will make access a much easier process to learn about and get information about. New information is available by e-mail now.

Follow the International AIDS Conference in English, Spanish and other languages. Please e-mail a Request Information post for assistance, or call our national number at 1-800-734-7104

On August 21-22, 2008 - The Health Justice Action Conference (H-JAC) sponsored HIV and HCV treatment in California by the Center for Health Justice is now posted

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

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.

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.

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

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 .