PrEPing for the end of the HIV/AIDS epidemic

 via The Madison Times, By Phil Wilson


We have reached a deciding moment. HIV is 100 percent preventable, including among some of our most at-risk populations: women, gay and bisexual men and young adults.  HIV is also 100 percent diagnosable and in many cases treatable.  Our prevention toolbox is now exploding with options. We now have the all of the tools needed to end the AIDS epidemic!

The promising new PrEP results arrive at a critical time.  Wednesday marked the one-year anniversary of the launch of the historic National HIV/AIDS Strategy, the nation’s first comprehensive roadmap for fighting the epidemic, and one that places the well-being of Black people front and center. We also have health-insurance reform to provide care to the least among us.

But the anniversary and this remarkable string of study results come during an economic downturn that has seen many people lose jobs and others slip through the proverbial “safety net”—losing health insurance, unemployment, and other benefits.  It also comes at the same time many states are cutting funding for HIV/AIDS-prevention programs and the AIDS Drug Assistance Program (ADAP).

So while we have the toolkit to end the epidemic, the question remains whether we have the political will to invest in using the tools strategically, effectively and compassionately.

Read more.

Debt Ceiling Negotiations Could Halt Progress Against HIV/AIDS

via Huffpost Chicago, By David Ernesto Munar

As part of its debt ceiling negotiations, the Obama administration is on the verge of undermining one of the most significant policies it has put in place to alleviate the nation's 30-year HIV/AIDS crisis, which directly affects more than 1.2 million Americans.

In a sad twist of irony, the White House proposal to rollback critical health benefits, essential to the control of HIV/AIDS, is emerging on the one-year anniversary of the National HIV/AIDS Strategy, unveiled by President Obama in July 2010.

The Center on Budget and Policy Priorities reports that the White House is considering deep federal funding cuts for state Medicaid programs, a proposal which could have an immediate, chilling effect on efforts to meet the benchmark goals described in the National HIV/AIDS Strategy. Moreover, it would render the federal health reform law virtually meaningless for millions of low-income Americans.

Medicaid expansion for all low-income Americans, regardless of their health status, is the centerpiece of the health reform law championed by President Obama in 2010. Without full funding from the federal government to help states finance Medicaid expansion, low-income individuals -- including hundreds of thousands with and at risk for HIV -- will struggle to gain access to adequate healthcare services from bankrupt Medicaid programs, which will be unable to make up the shortfall in reduced federal funding.

The White House contends that its proposal for a "blended rate" of Medicaid financing for states is far superior to GOP plans to give states a fixed block grant to cover all their low-income healthcare needs, no matter how extensive. While indisputably better than the draconian GOP proposal, a blended rate would likely shortchange states of billions in Medicaid financing that they otherwise would receive under a fully implemented health reform law beginning in 2014.

Faced with reduced federal funding, most cash-strapped states will have no choice but to ration healthcare services and further erode already dangerously low provider reimbursement rates

Read more.  

AFC Urges Governor, General Assembly to Reverse Decision in the Interest of Public Health

via AIDS Foundation Chicago

On April 15, the Illinois Department of Public Health (IDPH) announced plans to restrict access to the AIDS Drug Assistance Program (ADAP) to new applicants with incomes at or below 300 percent of the federal poverty level ($32,670 for a single individual) beginning in July.  The current limit to qualify for Illinois ADAP is 500 percent of federal poverty ($54,450 for a single individual).

“This is a sad day for the fight against HIV/AIDS in Illinois,” said David Ernesto Munar, President/CEO of the AIDS Foundation of Chicago (AFC).  “The new policy will keep ADAP out-of-reach for hundreds of individuals who have nowhere else to turn for help.  Many will simply forgo treatment, at great risk to themselves and their partners.”

Jointly funded by the federal and state governments, ADAP provides HIV medications each month to more than 4,200 Illinoisans who have no other means to afford their lifesaving medications, which can cost $18,000 or more per year.

All current program recipients, including those with incomes between 300-500 percent of poverty, will continue to receive ADAP services, provided they meet other eligibility criteria and reapply for the program every six months.  Stemming spiraling costs that threaten continuity of care for existing program clients motivated the changes, state officials said. 

The announcement comes on the heels of two years of financial pressure on the program.  Record numbers of people with HIV became eligible and joined ADAP as a result of the economic downturn, high unemployment, and losses of private health insurance.  Illinois has struggled to keep its program solvent in the face of inadequate federal funding.  Nationally, nearly 8,000 people with HIV in 11 states are on ADAP waiting lists.

In 2009, Gov. Quinn redirected an additional $7 million, including portions of the state’s HIV prevention, housing and care budgets, toward ADAP to avoid financial collapse.  With pressure from state lawmakers to achieve even greater savings in government services to close the historic budget gap, public health officials forecast a $1.8 million shortfall for ADAP in 2012 without cost-containment measures.  In addition, Illinois received nearly $5 million this year in one-time supplemental federal funding because the state’s caseload grew so significantly.   However, slower growth to date means Illinois may not receive this funding  next year.

“We’re fully committed to continuing to work closely with the General Assembly, Governor Quinn, IDPH, and federal lawmakers to identify additional funds that will allow unrestricted ADAP access for Illinoisans who desperately need HIV medications to survive and thrive,” said John Peller, AFC Vice President of Policy.

While unsupportive of the service reductions, AFC recognizes that absent additional state and federal funding, ADAP officials were left with few options to safeguard services for existing ADAP clients.   
However, one aspect of the cost-cutting plan that is particularly concerning to AFC is the decision to redefine eligibility criteria rather than institute a waiting list. 

“No one wants to see an ADAP wait list in Illinois but if service cuts are unavoidable, a waiting list is preferred to new eligibility criteria,” Munar said.  “A waiting list keeps alive hope that the program can be stabilized and that full access can be restored.  In addition, a wait list allows the state to closely monitor the health of those denied medications and affords these individuals greater opportunities to seek assistance directly from pharmaceutical companies.  A wait list could also make Illinois eligible for emergency federal funding assistance.  Finally, the wait list becomes a powerful reminder to public officials about the persistent, unmet needs for HIV medication access.”

Based on past enrollment data, the new eligibility criteria will likely affect 100 or more individuals annually who might otherwise become eligible for ADAP.  Many clients in this income bracket are working but uninsured and unable to afford the high cost of HIV medications without assistance. IDPH expects the change in eligibility to save $1.3 million, or just under 3 percent of program costs.

“Denying access to HIV medications will cost taxpayers in the long-run,” Munar noted. “Without medication access, HIV-positive people are at high risk of dangerous opportunistic infections, costly hospital stays, and irreversible damage to their health.  Just as important, HIV-positive people can dramatically reduce chances of transmitting the virus to others by adhering to a regular medication treatment.  Illinois might save $1.3 million now, but the state will likely foot the bill later in increased hospital care and more cases of HIV transmission.” 

As part of a responsible budget response, AFC urges Illinois officials to consider creative solutions, such as pursuing a waiver application with the federal government to expand Medicaid coverage for non-disabled low-income people with HIV.  The Obama Administration directed the federal Medicaid program to create a streamlined application process for expanded HIV care as part of the National HIV/AIDS Strategy.  Illinois should explore this option as a way to match its state HIV investments with federal Medicaid funds.  Doing so will effectively decrease the need for ADAP.

In addition, AFC urges the Illinois House to abandon its artificially low revenue estimate for the next state fiscal year. This overly conservative estimate will force $1.3 billion in needless funding cuts to vital programs such as ADAP. The General Assembly and Governor Quinn should also consider other measures to prevent loss of state revenue, such as requiring businesses to follow current depreciation rules instead of newly enacted federal rules. This change would retain several hundred million dollars in state revenue that would otherwise be lost.

For more information on ADAP, visit www.aidschicago.org/adap. View the April 15 IDPH memo.

HIV Meds Access Campaign- We Want Your Stories

The HIV Meds Access Campaign, which The AIDS Foundation of Chicago (AFC) is part of, is asking people living with HIV/AIDS to share their stories about accessing medication and health care services. These personal anecdotes help us creatively and effectively demonstrate to state and federal lawmakers why programs that provide medication and care are critical for people living with HIV/AIDS.

Additionally, these stories generate media attention on the importance of things like ADAP and the Ryan White Care Act.

As you know, we’re all facing a collective battle at both the state and federal levels when it comes to budget cuts to HIV/AIDS programs. I’m hoping that you can take a moment to think of at least one or two people who have a particularly compelling story when it comes to HIV and health care access, and see if they might be willing to share their story with us here. We would also encourage you to forward this message to your network of colleagues and consumers. Please let folks know that we will not release names to anyone without that individual’s written permission.

Illinois AIDS Drug Assistance Program Update

There are two important changes to Illinois ADAP that will benefit people with HIV who get their medications from either private insurance or Medicare. In addition, a third change may make it possible for people on ADAP to afford comprehensive health insurance under the new Illinois Pre-Existing Condition Insurance Plan.

1. More help with co-pays and premiums if you get your HIV medications through your insurance. ACTION NEEDED: If you have private insurance and earn less than $54,450 a year, consider applying for ADAP.

• ADAP used to enroll only people whose private insurance required them to pay more than 20% of the cost of each prescription, or who had co-pays of more than $100. ADAP will now enroll anyone with private insurance and pay your out-of-pocket costs, including any deductibles and co-pays. Note that your private plan must be able to coordinate with the ADAP pharmacy. In addition, the insurance company cannot require prescriptions for more than a one-month supply of medication. (ADAP will not a fill a three-month supply.) In addition, you must meet the other ADAP eligibility requirements.

2. More help with co-pays and deductibles for people who get their HIV medications through a Part D Medicare Plan. ACTION NEEDED: If you have Medicare and your income is less than $54,450, consider applying for ADAP. You can get help paying for your medications.

• If you are on Medicare and your income is under $26,917, you are probably already getting help with your premiums and co-pays from either Social Security Extra Help or Illinois Cares Rx. Your Part D prescription drug premiums are being paid and you probably don’t spend more than about $6 for each HIV medication. ADAP can now help you with these small co-pays too. Every dollar is probably important to you, so enroll in ADAP and get help with those co-pays.

• If you are on Medicare and your income is over $26,917, but under the ADAP limit of $54,450, you probably couldn’t afford your HIV medications last year, and got them from ADAP. Effective January 1st, 2011, the Affordable Care Act (the 2010 health care reform bill) allows the money ADAP spends on your behalf on your HIV medications to count toward your out-of-pocket costs. What does this mean to you? This year, you can get your HIV medications from your Medicare Part D plan all year, and ADAP will pay your out-of-pocket costs for HIV medications. The money ADAP spends on your HIV medications will help you get out of the Part D “donut hole”. ADAP will continue to help with your co-pays for HIV medications once you are in the “catastrophic” phase of the Part D program. You only have to pay 5% toward your non-HIV medications.

• One caution: Some people on ADAP now never reach the donut hole for their non-HIV medications. That means they are paying 20% of the costs of their non-HIV medications all year long. With this change, they will reach the donut hole, and may have to pay 100% of the cost of their non-HIV drugs during the donut hole period.

• As with private insurance plans, your Medicare Part D plan must coordinate with the ADAP pharmacy in order for you to be able to take advantage of these changes.

3. New Health Insurance Option for People on ADAP.

• Have you been without insurance for six months or more? (ADAP or free medical care from a Ryan White clinic doesn’t count). If so, you may be eligible for the new Illinois Pre-Existing Insurance Plan (IPXP).

Another change that health care reform has already brought to Illinois is the establishment of a new insurance plan for people who are uninsured and unable to buy insurance on the private market. Premiums for this new policy range from $135 to $653 per month, depending on your age, where you live, and whether you are a smoker. Illinois CHIC will pay up to $500 toward your premiums and Illinois ADAP will also help with your co-pays and deductibles for your HIV medication. This is a tremendous opportunity for people on CHIC and ADAP to obtain comprehensive health insurance. More information is available here.

If you have questions, call Illinois ADAP at 800-825-3518 or visit the ADAP website. Note that as of February 7, the criteria listed on the ADAP application and website does not reflect the policies above, announced at a January 21, 2011 meeting of the ADAP Medical Issues Advisory Board.

Yes, it’s complicated! You can also get more information about any of these changes from the AIDS Legal Council of Chicago. Call toll-free from anywhere in Illinois, 866-506-3038.

AIDS Waiting Lists Grow Amid Economic Woes

via NPR, by Brenda Wilson

[note - as of July 2, 2,090 people are now on ADAP waiting lists across the country - a record] 

 
It's a veritable pileup — a convergence of factors that's led to a long line of HIV/AIDS patients waiting for assistance to pay for the medicines that have helped them live longer and healthier lives.

Now, many people with HIV are losing jobs, along with insurance, or discovering that they are infected at a time when the AIDS Drug Assistance Program — ADAP — they depend on is being overwhelmed by demands being made on it. Federal and state budgets aren't meeting the challenge.

Listen, read the rest.

Governor Pat Quinn Saves AIDS Drugs Program From Illinois Budget Wreck

via Huffington Post, by David Ormsby

Guess what?

In the belching, burning wreckage of the Illinois budget, a survivor, miraculously, emerged.

Governor Pat Quinn announced today that state funding for the Illinois AIDS Drug Assistance Program would be spared.

In fact, Quinn will be helping more people.

The program, which provides life-saving HIV medications to low-income people with HIV, will be sufficiently funded to "serve approximately 4,500 clients a month - an increase of 400" recipients, avoiding an advisory group-recommended waiting list.

"We thank Governor Quinn for underscoring the importance of sustaining access to lifesaving HIV medications," said Mark Ishaug, President/CEO of the AIDS Foundation of Chicago.

Quinn today did, however, unsheathe and swing a meat cleaver at other state programs, slicing $1.4 billion. But medicine will continue to flow to ill individuals.

Read the rest.

We can't stand up for our country if we are too sick to stand

Silence Still Equals Death
via Huffington Post, by Jim Pickett

As a gay man living with HIV, I am feeling really conflicted during this month of LGBT Pride. I know I am supposed to be awash in warm, fuzzy feelings of pride and joy, and that I should have lots of parties and the big parade on my agenda.

But you know what? Not so much. 

Read the rest.

Advisory Panel Recommends Immediate ADAP Wait List in Illinois

Facing an historic budget crisis that could destabilize HIV treatment access for more than 4,000 low-income Illinoisans with HIV/AIDS, a state advisory panel voted on May 21 to urge Illinois to immediately close the AIDS Drug Assistance Program (ADAP) to new applicants and begin a waiting list. The recommendation is now under review by state officials.

“Because the program is deeply underfunded, Illinois must take immediate steps to preserve services for those who rely on ADAP for their life-saving care,” said David Ernesto Munar, vice president of the AIDS Foundation of Chicago (AFC), and a member of the ADAP Medical Issues Advisory Board, which made the recommendation. “The program faces total fiscal collapse unless immediate actions are taken.”

Take Action Now!

Read the rest at AIDS Connect.

State Budget, ADAP and Health Care Reform - Updates on All at the SPC Policy Advocacy Meeting January 14

Please join the AIDS Foundation of Chicago Service Provider Council’s Policy and Advocacy Committee for our first meeting of the new year on January 14th from 4-6PM at the AIDS Foundation of Chicago. We’ll tackle all the big issues facing the HIV/AIDS community in 2010: the state budget, ADAP and health care reform. Get the inside scoop and find out where we are, and where we’re heading.

You must RSVP to galdrighetti@aidschicago.org to attend.

SPC Policy and Advocacy Meeting
January 14, 2010, 4-6PM
AIDS Foundation of Chicago
200 W Jackson, #2200
Chicago, IL 60606

Peter, I am afraid my insurance provide will drop me. What can I do?

[Peter Pointers is here 4 YOU, as a service to LifeLube readers - whatever question you may have regarding sexual health, physical health, mental/emotional and spiritual health - ask him. He will find the answers you are looking 4. Below is a recent Q&A you may be interested to read.]

Question: I currently have medical insurance. HIV/AIDS medication is expensive. I'm afraid my insurance provider will drop me should I have the need to go back on medication. What can I do? I live in Chicago and the cost of living is high and while I make a decent living, paying for medication would bankrupt me.

Answer: Thank you for contacting me. I'm happy that you are looking for information to help you stay healthy and get the medications that you may need.

To begin, this question is pretty complex and has lots of layers. It might be good to talk with someone over the phone or in person who may be able to talk through some of the more complex parts with you.

For just this reason, I spoke with two great resources in the field of HIV Case Management and HIV Public Policy: Michael McFadden and John Peller. Michael McFadden, LCSW is the Director of Social Services at Howard Brown Health Center. John Peller is the Director of Government Relations at the AIDS Foundation of Chicago.

Both of them had similar referrals to share for information regarding insurance coverage and access to medications. Below is a summary of their input.

1. Contact your insurance company to determine what your prescription benefits are and find out what the actual out of pocket costs may be. HIV medications are expensive and depending on your prescriptions coverage, may have significant co-pays. Once you discuss your coverage with your insurance company, you may have to figure out some creative budgeting solutions to determine how you are going to pay for your medications each month.

2. A major determining factor will be if you have an Individual versus a Group Insurance Plan: If you are currently utilizing an individual insurance plan, there is the risk that your insurer may not renew your policy in the future. It is also possible that the insurance company would raise your rates significantly to the point where you couldn't afford coverage, although that would not automatically happen. If you have group (or employment-based) insurance, the insurer cannot drop you. It is possible that through the utilization of the insurance, the insurer may increase premiums for group rates.

3. Dealing with benefits can be very complicated. It might be good to work with a Case Manager to sort through some of the details. Also, there are some programs available specifically for folks impacted by HIV. Case Managers are familiar with these programs. To get connected to a case manager, you can contact the AIDS Foundation of Chicago at 312.922.2322

4. ADAP & CHIC: There are two programs through the State of Illinois that provide a tremendous benefit to Illinois residents living with HIV. ADAP (AIDS Drug Assistance Program) provides free HIV medications to eligible patients. ADAP eligibility is for individuals who earn less than $54,150 per year (for an individual, more for a family - 500% of federal poverty level, if you want to get technical). ADAP also will most likely coordinate with your private insurance program and help to pay your out-of-pocket costs. CHIC (The Continuation of Health Insurance Coverage) Program helps people who have AIDS or HIV and have left their jobs. Many people who no longer work for an employer can still, by law, receive health insurance coverage through their employers for 18 months. This program helps pay the monthly payments (premiums) for the health insurance you continue to receive, including family insurance that covers your spouse or children

5. You could also talk with your doctor about ways to pay for HIV medications. Many drug companies have programs that will help you pay the out-of-pocket costs, called "Patient Assistance Programs" for the medications they supply. You can check www.needymeds.com to see if there are patient assistance programs for the medications you take and to determine what the eligibility criteria may be.

6. MOST IMPORTANTLY - AIDS Legal Council of Chicago is a fantastic resource for individuals with HIV. They have developed some wonderful legal guides that are available on their website, locally at (312) 427-8990, or toll-free at (866) 506.3038. Also, they can help you with applying for ADAP, understanding your private health insurance benefits, and other issues. You should absolutely call them if for any reason your insurance company screws you over, because there's a chance the company is doing something illegal.

7. Finally (and this is pretty obvious), stay healthy and take care of yourself! Learn how to manage your stress, including worrying about how to pay for HIV meds. Stress will weaken your immune system over time, and make it more likely that you'll have to go on meds.

8. And finally finally, as an important aside from Mr. Peller: "THIS IS WHY WE NEED HEALTH REFORM NOW! You are living with a chronic health condition, and you shouldn't have to worry about getting coverage or care when you need it to stay healthy and continue working (let alone live your life). You shouldn't have to worry about your insurance company cancelling coverage just because the cost goes up. The health reform proposals moving through Congress now would give you more options for affordable coverage and prohibit insurance companies from dropping you because you need more care. For more information on how health care reform would help you and others with HIV, click here."

I hope that some of those possible actions help. Please, feel free to contact me if you have any other concerns. Also, let me know how it goes!


Be Well,
Peter Pointers
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