Browsing Category: Policy/Advocacy

US Representative Schakowsky Seeks to Mobilize HIV Community Around 2012 Elections

by Jimmy Schneidewind, Public Policy Associate, AIDS United

2012 could be the most important election year ever for people living with HIV, according to United States Representative Jan Schakowsky. On Thursday, November 10, AIDS United held an institute at the United States Conference on AIDS entitled, “HIV/AIDS and Election 2012,” at which Representative Schakowsky addressed the importance of the 2012 presidential and congressional elections and the impact the election results will have on HIV communities.

Many HIV advocates realize that biomedical-advances and policy initiatives over the past year and a half, that we are closer than ever to ending the HIV epidemic. Whether or not we capitalize on this extraordinary opportunity will largely depend on the next White House Administration and Congress’ commitment to implement and fund these important achievements. Schakowsky spoke to this, reminding the audience that the 113th Congress will be charged with reauthorizing the Ryan White Care Act, implementing the major reforms of the Affordable Care Act, continuing the implementation of the National HIV/AIDS Strategy, and determining funding appropriations for domestic HIV/AIDS programs through the Budget Control Act and fiscal year budgets.

Schakowsky implored the audience to begin organizing and advocating NOW for the candidates that will best represent the issues important to people living with HIV.  As examples of the progress that can be made when people become galvanized around an issue, Schakowsky pointed to union leaders in Ohio who struck down a law to curb collective bargaining rights for public workers, and the recent recall in Arizona of Republican State Senator Russell Pearce — the architect of Arizona’s austere anti-immigration law.

We have more options available to us in the fight against HIV than at any other time in our history. We have the first-ever National HIV/AIDS Strategy, written and conceived of by the federal government, which calls for a massive reduction in infections, stigma, discrimination, a massive increase in access to care, and a stated goal of ending HIV in this country. We have the roadmap and the momentum needed to make the next five years the most historic period ever for fighting HIV. If we are to follow through on the call to action by Representative Schakowsky and advocates across the country, we must ensure that we are represented by public officials who understand and are steadfast in the fight against HIV. That starts right now as we prepare for 2012: the most important election year yet for people living with HIV.

House of Representatives to Vote on the Constitutional Balanced Budget Amendment

by Donna Crews, Government Affairs Director

As required in the Budget Control Act of 2011 the House and Senate must vote on a Constitutional Balanced Budget Amendment.  The  legislation states, “After September 30, 2011, and not later than December 31, 2011, the House of Representatives and Senate, respectively, shall vote on passage of a joint resolution, the title of which is as follows: ‘‘Joint resolution proposing a balanced budget amendment to the Constitution of the United States.’’’  There are relatively few legislative business days left before December 31st.  The House is scheduled to bring their version of a Constitutional Balanced Budget Amendment to the floor this week, with a vote on Friday, November 18th.

The proposed amendment H.J. Res 2, requires that outlays (what the government spends) do not exceed receipts (what the government brings in) each year, and requires a three-fifths majority to raise the debt ceiling. A similar version was passed by the House in 1995, with 300 votes, but failed in the Senate by only one vote. Constitutional amendments require a two-thirds majority to pass — 290 votes in the House, and 67 votes in the Senate.

The Senate may or may not bring the same version of the bill to the Senate floor and no time has been announced for a Senate vote.  If the exact legislation passed both chambers it would then be sent to the states for ratification by at least 38 states (3/4 of states) in a seven year period.  It would not require a signature from the President.  It is not expected that this legislation will get the necessary 2/3 majority votes to pass in either chamber, but we must advocate and ensure it does not pass.

A balanced budget amendment to the Constitution is not the solution to the current deficit situation we find the country in at this time.  Many economists believe a balanced budget amendment would be a terrible idea.  Macroeconomic Advisor (a nonpartisan mainstream firm) has said that, “any version of a balanced budget amendment would do significant harm to the American economy”, according to an article entitled Economic Forecasting Firm Harshily Criticizes Proposed Constitutional Balanced Budget Amendment posted here at the Center for Budget and Policy Priorities.

While Congress and the Administration strive to bring the budget as close to balanced as possible, there are many extenuating circumstances that often come to bear, such as wars, natural disasters, high unemployment, and need for government programs to cover safety net issues for the poor and disenfranchised.  Please read the letter signed by AIDS United and over 100 National Organizations Opposing the Balanced Budget Amendment.  The Center for Budget and Policy Priorities has additional background information on the balanced budget amendment that the House is considering and the amount of program cuts that may be implemented if the amendment was enacted.  Click here for further details and resources.

AIDS United is opposed to this legislation.  We urge you to contact your House Member of Congress and ask for a “No” vote on the Balanced Budget Amendment on Friday.

PDUFA: Funny Name; Vital Program

by Ronald Johnson, Vice President of Policy and Advocacy, AIDS United

Today, October 24, 2011, the Food and Drug Administration (FDA) held a public meeting to discuss proposed recommendations for reauthorizing PDUFA, the Prescription Drug User Fee Act.  For many people, PDUFA may be just another funny, “government-speak” acronym but it is in fact a vital initiative in disease treatment that has impacted thousands of lives and was achieved with the strong support of AIDS advocates.

In 1992, Congress passed PDUFA to streamline the drug approval review process and make it more timely and predictable. Under PDUFA, user fees are collected from pharmaceutical companies that apply for approval of new drugs and companies that apply for biologics license. The fees are used strictly to enhance and support FDA’s drug and biologics review process.  The fees supplement and do not supplant FDA funding from the annual appropriation process.  The law also mandates FDA to set a standard goal of reviewing new drug applications within 10 months and a priority review goal of six months.

For Americans living with serious or chronic diseases and disabilities, new treatments can’t come fast enough. As a person living with HIV/AIDS, I’ve certainly benefited from FDA approval of new drugs that have improved HIV treatment regimens dramatically.  Many thousands of people like me are alive and healthy because of treatment advances.  Prior to PDUFA, the FDA’s review process for new drugs was slow compared with other countries.  AIDS activism in the late 1980s, including large protest demonstrations organized by ACT-UP, brought increased attention to the lengthy review process and its impact on delaying approval of medications that could be used to fight HIV and the opportunistic infections that then were responsible for the preponderance of AIDS-related deaths.  PDUFA enactment allowed the FDA to have the funds needed to hire additional reviewers and support staff and to upgrade its information technology systems.  FDA committed to complete reviews in a predictable timeframe.

PDUFA has been reauthorized three times since its original adoption.  The current 5-year period, PDUFA IV, ends September 2012.  The user fees account for about two-thirds of the FDA’s budget for new drugs and biologics review.

PDUFA has improved the new drug approval process significantly, enabling FDA to speed up the review process without compromising high standards for safety, efficacy, and quality of new drugs prior to approval.  This has allowed faster patient access to new drugs and biologics and has enabled the U.S. to be a world leader in introducing new drugs.  In testimony to the House Energy and Commerce Committee’s Subcommittee on Health this past July, Dr. Janet Woodcock, who heads the FDA’s drug review unit, noted that the public has gained faster access to over 1,500 new drugs and biologics since 1992.  The U.S. now leads the world in the initial introduction of new drugs.

Following negotiations with industry and consultations with public stakeholders, FDA issued recommendations for reauthorizing PDUFA for another 5-year period, through FY 2017.  FDA’s recommendations for PDUFA V address concerns and priorities raised by industry and stakeholders, including consumers and include three proposals that were specifically advocated for by patients.  The recommendations include a proposed new review model intended to improve communication between the FDA review team and the applying drug sponsor and to improve the effectiveness of the first cycle review process so as to decrease the number of review cycles needed to review a drug and thus to speed up patients’ access to safe, effective and high quality new drugs and biologics.  This would reverse a creeping increase in review times over the past few years that has compromised FDA’s performance goals.

An important feature of the recommendations is an increase in the user fee revenue to $693 million in FY 2013.  In a time when federal appropriations are being cut and facing even more devastating cuts, the funding stability that PDUFA provides is critical.

Scientific advances over the past 18 months in HIV vaccine research, microbicide research, pre-exposure prophylaxis for HIV infection, and HIV treatment as prevention underscore the need not only for maintaining a robust research and development process but also for maintain a process for timely, efficient review of new drugs.  Once the recommendations for reauthorization are submitted to Congress sometime early in 2012, both houses should move forward quickly towards a clean reauthorization before the September expiration.  AIDS United strongly supports reauthorizing PDUFA and will stay engaged to insure the continuation of this vital program with the funny name.

Mapping Pathways at the National HIV Prevention Conference

by Jessica Terlikowski, Director of Regional Organizing

Clinical trial results over the last year have demonstrated that new prevention approaches such as ARV-based microbicides, pre-exposure prophylaxis (PrEP), and expanded treatment of people living with HIV can significantly reduce a person’s risk of contracting or transmitting HIV. The findings give the HIV community new hope, but also raise new and critical questions of how, if, where, when, and to whom these new strategies will be made available.

To ensure sound decisions that best address the epidemic, being careful to preserve human rights and improve the health of those living with and at risk to HIV, AIDS United, AIDS Foundation of Chicago, Desmond Tutu HIV Foundation, and NAZ India are asking a number of questions regarding the multiple uses of ARVs for prevention. People living with HIV/AIDS (PLWHA), policymakers, government officials, advocates, clinicians, researchers, industry experts, and other stakeholders have important perspectives to share and must be at the table to discuss the complexities of these new strategies. This collective effort to create and support a research-driven, community-led global understanding of the emerging evidence around adoption of ARV-based prevention strategies is Mapping Pathways.

As part of this unique project, AIDS United and the AIDS Foundation of Chicago hosted a lively community input session at the National HIV Prevention Conference last week to learn what HIV prevention leaders think about implementing the diverse range of ARV-based prevention tools. The group generally agreed that we are in an exciting time, but also questioned how the HIV community and the U.S. government could even consider implementing a strategy that provides medications to HIV-negative people when tens of thousands of people with HIV in the U.S. cannot access the drugs they need to stay healthy. Various participants also noted that not all PLWHA are ready to start treatment. Some individuals expressed concern that the rights of PLWHA could be compromised in favor of the public’s health and stated that systems must be instituted to mitigate coercion and protect the rights of the individual. Advocates were equally concerned that interventions such as PrEP would only succeed in worsening HIV-related health disparities in the U.S. since the cost is so great, treatment access is already limited, and both state and federal governments continue to cut HIV programs. One advocate observed that the ARV-focused discussion has resulted in the marginalization of other bio-medical strategies including vaccines and non-ARV based microbicides.

We also asked participants to share their thoughts on the types of data, tools, and information they believe are needed to help answer the more complicated questions and better address the community’s concerns. Several suggestions were made, but common to all of them was a request that tools be simple, accessible, and useful for community stakeholders and decision makers, including:

  • Simple factsheets explaining the various ARV strategies, how they work, and the outcomes of each of the clinical trials;
  • An if-then tool to help stakeholders better understand the potential implications of trial results; and
  • A voice of the community document that includes statements from diverse individuals explaining why access to a broad range of HIV preventions, including those that are ARV-based, are important.

AIDS United and its partners look forward to continuing these conversations with our stakeholders around the country. You can stay connected to Mapping Pathways and all the latest ARV-based prevention news through our blog, Facebook, and Twitter. We invite you to join the dialogue and contribute YOUR thoughts by taking the Mapping Pathways survey.

The Political is Personal

by Julia Cheng, Pedro Zamora Fellow

It’s been almost eight months since I started working here at AIDS United as a Pedro Zamora fellow and it’s been over a year since I moved to the D.C. area. As I wrap up my last week both at AIDS United and D.C., I’m reflecting on my time and trying to construct a narrative of what I’ve learned. But you know what? What I’ve learned about policy, advocacy, and engagement with government can be easier reflected in where I’ve come from and where I’m going. I think that is somewhat apt for a year of working in policy—it’s a fuzzy field in some ways. For every concrete thing I’ve generated, I think it’s safe to say there are numerous more vague ideas that may or may not have come to fruition, but are nonetheless important.

Where do I come from? I come to AU as an advocate for sexual and reproductive health and rights. More literally where I come from? Mississippi. Doesn’t that explain a lot? Growing up in Mississippi, it’s probably not surprising that I didn’t receive sexuality education. Though I never received any formal sexuality education growing up, sometimes mistakenly, I’ve felt I was subject to an abstinence-only-until-marriage program, that’s how palpable and close the mentality was for me. It’s hard to pinpoint where the messages were coming from. Certainly, some from my peers who actually had such programs and some from adults around me, maybe most though, from politicians and state officials who relied on such messages to draw support. There’s also that message from the sheer lack of any services regarding sex and reproduction for young unmarried (presumed straight) individuals.

One of the things I remember most from that time is how stressful being around young sexually active individuals without any sort of support services. I can vividly remember the relief when Plan B became available over the counter for those aged over seventeen years old, conveniently around the time me and my friends were turning seventeen. I also remember the misinformation—a friend drank half a cup of vinegar in hopes to prevent unwanted pregnancy before belatedly realizing it was a scare tactic. More recently, I learned the convoluted way that misinformation came about. My friend drove with other two other people to a health clinic. The two accompanying friends went inside to ask for advice and reported back to my friend. Not only the appalling misinformation, but the way that the misinformation was perpetuated is telling and speaks to the amount of stigma, fear, and shame that came along with sex in Mississippi. Thank God for the internet, as flawed as it can be.

Another vivid memory is when Judy Shepard (mother of Matthew Shepard) came to speak in my hometown. That was—and still is—big moment for me. My friend with whom I went to the event started a Gay Straight Alliance (GSA) soon after in our school. Fortunately, our public boarding school was somewhat of a haven for LGB youth, some of whom came to our school so that they could come out with less fear far away from their families, hometown friends, and communities; but, it didn’t completely remove from toxic environments and sometimes there would be coming outs and outings that would lead to being kicked out or subject to an endless attrition. I have always been interested in social justice, but the pain extricated from my friends were formative in evolving my interest to passion, from sympathizer to advocate.

You’ll notice that pregnancy was our main worry and there was much less stress about STIs. I can’t recall ever worrying about HIV. Why? I think because pregnant teens were something we could see all around us, but STIs, HIV, were invisible. Without ever being taught about sexually transmitted infections, why would we think about them? It was like we had this book and we knew there were important things inside, but no one had taught us to read. The importance of inclusive and comprehensive sexuality education led me to interning at SIECUS which eventually brought me to AIDS United.

Where I am going? After month at home with friends and family, I will be moving to Kenya for twenty-seven months as a Peace Corps Science Education Volunteer. Much of my reasons for joining the Peace Corps have to do with my interest in health and communities and how they intersect. I come to health, as well as HIV, from the perspective of social justice. As I face this great unknown of the future, there are some things I know I can bring from my experience at AIDS United. Inevitably, my career will involve some aspect of HIV education and I look forward to using some of the knowledge I’ve acquired at AU.

The point I’m trying to get at conveying my past and my future is that they illustrate to me how the work I will do and the work I wish someone had done for me connect to what I’ve done this past year. Both of these stories are “on the ground” as opposed to the seemingly removed politics of Capitol Hill. But policy and advocacy forms both. I came to D.C. not realizing that my interest was in policy. What I did know, though, was that the problems I faced and others faced were not my individual problems, but the result of a more structural society level problem and it turned out that policy and advocacy addresses those issues. It reminds me of the feminist phrase “the personal is political,” a concept that should ring true with all communities concerned with social justice. As I move on to work where I will not have a political voice (Peace Corps maintains an apolitical presence in the countries where it exists), the same tenets still hold true. Our problems, the problems of individuals, can only be solved by community action and change. Our work, as individuals, is only part of a greater picture that we cannot detach ourselves from. Though many of us work or live removed from policy, it’s important to remember how intricately tied we are to the politics and policy made here in D.C., in our states, and in our local communities—and make our voice heard. In other words, the political, trust me, will get personal.

Just a Bill

by Bill McColl, Political Director

I know, I know.  Congress is out of Washington and they aren’t taking any immediate actions that will affect people living with HIV.  Everyone is dealing with dried out lawns, tomato crops, vacation plans, broken ACs and it’s too hot to think about politics.  So we can take a break, right?

Actually, no!  AIDS United urges you to continue working to contact your Senators and Representatives but in August we urge you to do it in person.

Why?  Three simple reasons.

First, your Senators and Representatives are likely to spend at least part of the next three weeks somewhere near you.  They will be hosting Town Hall Meetings, meetings in their offices and showing up at public events.  They need to hear from their constituents that HIV/AIDS funding and health care is important to their constituents and shouldn’t be cut.  And, while some of them may not listen, the ones who are planning to be in office a long time generally do.

Second, it helps establish a relationship with your Member of Congress.  Who do Members of Congress listen to?  Well, while it may seem that they only listen to their donors, they really do listen to their constituents.  In particular they listen to constituents whom they know and have come to trust.  That means that someone who is persistent , and who is reasonable and trustworthy.  Someone that can become a go to person on an issue or two.

Third, it can help you to meet or talk to Senate and House Staffers.  If you speak to your Member of Congress  about an issue, he or she will likely refer you to a Congressional staffer.  Take him or her up on the offer and get to meet these staffers (see more about staffers below).  These are the people who help shape the decisions when they count.

The Legislative Process: How You Get Heard and What that SchoolHouse Rock! Video Left Out

August is a bit of a nostalgic month – it’s the month of no school, county fairs and the harvest.  I watched Schoolhouse Rock! and the iconic video, “I’m Just a Bill” which describes the legislative process in basic terms.  Of course it doesn’t describe, the arm twisting, the letter writing, the pleading, the advocacy that goes into a bill.  No video could.  But it does show the complicated process of getting a bill to pass both the House of Representatives and the Senate and then signed by the President.  Every Member of Congress counts.  The more people make sure that their own Members of Congress will support these issues, the more we can be sure that the entire Congress will find ways to support prevention, treatment and research for HIV/AIDS.

There is usually a hierarchy to Congressional personal staff.  They are usually trusted to make recommendations about approaching an issue.  If you can convince a staff member to champion your cause, you can often get the Member to do so too.  Similarly they are also the gate-keepers to the Member.  If you can’t get an idea past the staff, you probably won’t get it to a Senator or Representative.  In addition to personal staff, particularly a Chair or Ranking Member of a Committee or Subcommittee may have access to Committee staff.  However, for the most part a Member of Congress is likely to refer you to their personal staff.  With some variation, most Members have at least the following:

Chief of Staff – The chief of staff is usually the most senior person in a Member of Congress’s office – and particularly for new Members, the chief of staff may have more experience with the way Congress works than the actual member.  The chief manages other staffers and is often a political expert who helps the Senator or Representative to understand the political implications of their decisions.

Legislative Director – The Legislative Director works with the chief of staff to manage other staffers and is often the person who is responsible for process questions – understanding how to move a bill through committee or the floor and legislative strategy.

Legislative Aide or Legislative Assistant (LA) – LAs are mid-level staffers who work on specific issues.  For the HIV/AIDS issue, the most important LA is the Health LA.  Health LAs are responsible for understanding an issue and doing so in a way that protects the interests of Members of Congress.  They often make the most basic decisions about whether or not an issue gets to a member of Congress.  Please be aware that these folks have no time to waste.  They may not only be responsible for every health care issue, but they may be responsible for other issues as well.  Legislative Correspondents (LCs) – LCs are junior staffers who assist the LAs and other office members to do basic work such as writing letters, returning e-mails and answering phones.

District or State Staff – These are staffers who work out of offices based in a Senator’s State or a Representative’s District.  Many of these staffers are responsible for constituent assistance and they can be very helpful resolving issues with federal agencies.  Also they are in touch with the LAs in Washington and can let them know if a particular issue is becoming a concern in the State or District.

Scheduler – Most offices have a scheduler based in Washington DC to coordinate the Members meetings (and some offices also have a system for them to coordinate staffers meetings).  Many offices will also have a separate District scheduler working to schedule the Member’s appearances in the District.

The size of a Senator or Representatives office varies depending on the number of constituents being served, whether they are a member of the Majority or Minority and seniority.  A senior Senator in the majority might have as many as 30 personal staffers while a junior minority Representative might have as few as five staffers.