ADAP Pill Box: All Things ADAP
The ADAP Advocacy Association (aaa+) is pleased to share its February 2010 edition of the "ADAP Pill Box" - a monthly e-publication focusing entirely on issues relating to the AIDS Drug Assistance Programs (ADAPs). aaa+ invites you to share the ADAP Pill Box by forwarding it to your friends and colleagues, and encourage them to join aaa+ on our our website. Tell them that individual membership is free. Also, please feel free to forward appropriate ADAP-related news items to info@adapadvocacyassociation.org so that we can include them in the next edition.
Earlier this month, President Barack Obama released his Fiscal Year 2010 (FY11) budget, which included a proposed increase of $39 million to the Ryan White CARE Act programs. Nearly half of the President's proposed increase to Ryan White was for the AIDS Drug Assistance Programs (ADAPs) - an increase of 2.4 percent. aaa+ praised the President's call for additional ADAP funding despite his requested discretionary spending freeze, but also recognized the concerns expressed by other HIV/AIDS advocates.
"With significant cuts to state and local budgets, and the growing number of new infections and people needing life-saving treatment and services, we are disappointed in the level of spending proposed by the president," said Carl Schmid, deputy executive director of the AIDS Institute, in a statement. He said the proposed increases are smaller than last year's, but local budgets are in much worse shape now (CQ HealthBeat, 02/02).
The AIDS Institute was joined by the National Viral Hepatitis Roundtable, which argued that the $1.8 million increase to viral hepatitis programs was too small.
"While the administration's proposed $1.8 million increase for the Division of Viral Hepatitis is better than we have seen in years, its budget proposal ultimately shortchanges more than 5 million Americans afflicted with chronic viral hepatitis," said Lorren Sandt, chairwoman of the National Viral Hepatitis Roundtable, in a statement (CQ HealthBeat, 02/02).
To learn more about the President's budget, please read the Office of National AIDS Policy (ONAP) fact sheet that can be found on their website.
In addition, aaa+ called on the Obama Administration to support an emergency supplemental for FY10 to alleviate the growing ADAP crisis nationwide. This vital federal-state program faced a $108.9 million shortfall for Fiscal Year 2009, just to keep pace with current demand. That shortfall led to waiting lists nationwide topping 500 - including Arkansas (9 people), Iowa (27 people), Kentucky (128 people), Montana (18 people), Nebraska (30 people), South Dakota (14 people), Tennessee (142 people), Utah (37 people) and Wyoming (13 people).
Between 2000 and 2008, states increased their share of the ADAP budget by 155% while the federal government increased its share by only 46% overall. The chart shows the increase by each party each year over the previous fiscal year in percentage points. States have basically increased - as well as pharmaceutical rebates - while the federal commitment has gone down! President Obama's $20 million increase basically mirrors previous ADAP funding increases proposed under his predecessor.In 2009, the ADAP waiting list grew by 1,000% and now exists in 11 states. An emergency funding stream was created in 2005 to deal with a similar list which eventually led to significant decreases on the list and eventually it's elimination in 2008. In light of the federal government's continued decrease in commitment to ADAP while states increased their own contributions over the past decade, and due to the current economic crunch that will not allow states to continue to cover the decreasing federal share of ADAP, it is imperative that the Congress expand the President's budget and put an end to the wait for patients with HIV.
We will continue to monitor the President's FY11 budget, as well as ongoing efforts to persuade the President and Congress to approve an FY10 ADAP emergency supplemental. Thank you.
Brandon M. Macsata, CEO
ADAP Advocacy Association (aaa+)
INSIDE THIS ISSUE
The ADAP Advocacy Association is a proud community partner of Washington, DC's "The Cherry Fund" - which is an independent, all-volunteer 501(c)(3) foundation whose sole purpose is to raise funds for the HIV/AIDS youth service community. The Fund focuses on organizations combating the spread of HIV infection & AIDS through prevention, treatment, and education in the nation's youth community. Learn more at online at http://www.cherryfund.org/.
NATIONAL NEWS...
NASTAD Releases February 2010 ADAP Watch
February 19, 2010
The National Association of State & Territorial AIDS Directors (NASTAD) released its February 2010 edition of ADAP Watch. As of February 19th, there were 559 individuals on ADAP waiting lists in eleven states - including 14 individuals in Arkansas, 16 individuals in Idaho, 49 individuals in Iowa, 162 individuals in Kentucky, 14 individuals in Montana, 21 individuals in Nebraska, 97 individuals in North Carolina, 24 individuals in South Dakota, 79 individuals in Tennessee, 69 individuals in Utah and 14 individuals in Wyoming. Some advocates in these states - and other states without waiting lists - caution that the number of individuals on ADAP waiting lists could actually be much higher because some states are allegedly using "gimmicks" to deem otherwise eligible patients to be 'ineligible' for the program. Whether or not this is actually happening, it is clear the ADAP crisis is getting much worse!
Read ADAP Watch - February 2010
Latino Commission on AIDS: The Administration and Congress Must Provide Emergency Funding for AIDS Drug Assistance Program
Source: Latino Commission on AIDS press release
February 16, 2010
New York, New York, February 16, 2010 - The Latino Commission on AIDS calls on the Obama Administration and Congress to provide an additional $126 million in FY2010 emergency funding to meet current AIDS Drug Assistance Program (ADAP) needs. The $20 million increase for ADAPs included in President Obama's recently released FY2011 proposed budget was a step in the right direction, but across the country ADAPs are struggling and unable to meet current demand for life saving therapies.
Amidst the worst economic crisis in decades, eleven ADAPs have already closed their doors to new clients at a time when individuals are losing their jobs and their insurance coverage at astronomical rates. Additionally, thirteen other states have instituted or anticipate instituting cost-containment measures such as reducing their eligibility level, cutting drugs from their formulary, instituting annual expenditure caps per client or capping enrollment. As of February 5, 2010, there were 472 (subsequently revised upward to 559 on February 19th) individuals on ADAP waiting lists in Arkansas, Idaho, Iowa, Kentucky, Montana, Nebraska, North Carolina, South Dakota, Tennessee, Utah and Wyoming.
"Already many of our most vulnerable populations are falling through the cracks," stated Guillermo Chacon, President of the Latino Commission on AIDS. "It makes economic sense to provide emergency funding to this life saving program rather than dealing with poor health outcomes, additional health care costs and loss of life. It is critical that ADAPs receive immediate emergency funding in order to continue to provide life-saving and life-sustaining medications."
NASTAD Calls on the Administration and Congress to Provide Emergency Funding for AIDS Drug Assistance Program
Source: National Association of State & Territorial AIDS Directors press release
February 16, 2010
The National Alliance of State and Territorial AIDS Directors (NASTAD) calls on the Obama Administration and Congress to provide an additional $126 million in FY2010 emergency funding to meet current AIDS Drug Assistance Program (ADAP) needs. NASTAD applauds the $20 million increase for ADAPs included in President Obama's recently released FY2011 proposed budget. However, ADAPs are struggling and unable to meet current demand for life saving therapies. Without additional funds, waiting lists for individuals to receive HIV medications will continue to grow and other program access restrictions will increase.
"We believe ADAPs are on the brink of the worst funding shortfall in many years," stated Julie Scofield, NASTAD's Executive Director. "Eleven ADAPs have closed their doors to new clients and two states have dropped their financial eligibility level to ensure they don't run out of money to serve those currently on the program," she added.
The current economic crisis has impacted ADAPs heavily. Individuals losing jobs and their insurance have created an increased demand for this critical program. During FY2009, ADAPs experienced an average monthly growth of 1,271 clients. This is an unprecedented increase of 80 percent from FY2008 when ADAPs experienced an average monthly growth of 706 clients.
ADAPs are the safety net under other public programs, such as Medicare and Medicaid. Almost seventy-five percent of ADAP clients earn less than 200 percent of the federal poverty level, which is $22,000 for an individual.
ADAPs received an increase of $20 million through the FY2010 Congressional appropriations process; however, this falls far short of what is necessary for ADAPs to clear current waiting lists and curtail implementation of additional cost-containment measures. ADAPs also received a $20 million increase in FY2009. This translated into an average increase of $358,000 for those states receiving increases in their ADAP awards.
NASTAD estimates that the additional $126 million needed in FY2010 emergency federal funding will only allow states to continue their programs with the same composition, not expand their programs in any way.
Emergency funding to curtail ADAP waiting lists has not been available since 2004 when President Bush provided additional funds to the program.
Thirteen states have instituted or anticipate instituting cost-containment measures such as reducing their eligibility level, cutting drugs from their formulary, instituting annual expenditure caps per client or capping enrollment. Additionally, there were 472 individuals on ADAP waiting lists in 11 states, as of February 5, 2010 (subsequently revised upward to 559 on February 19th). States with waiting lists include: Arkansas, Idaho, Iowa, Kentucky, Montana, Nebraska, North Carolina, South Dakota, Tennessee, Utah and Wyoming. More and more states are reporting that they will be unable to serve new individuals seeking ADAP services throughout FY2010. A few states have been forced to drop existing clients from their rolls due to lack of available funding.
"It is critical that ADAPs receive emergency funding in order to continue to provide life-saving and life-sustaining medications," remarked Scofield.
"Without these additional funds, eligible clients will fall through the cracks, resulting in poor health outcomes and additional health care costs. We call on the Administration, Congress, the states, and the pharmaceutical industry to work together to find a solution to this crisis," she concluded.
For more information, visit http://www.nastad.org.
ViiV Drug Co-Pay Program Extended to Selzentry, Viracept and Rescriptor
POZ Magazine | AIDSMeds.com
February 5, 2010
ViiV Healthcare - an HIV-focused company established by GlaxoSmithKline (GSK) and Pfizer - announced it will continue a drug co-payment assistance program for drugs formerly sold by GSK and will extend the program to cover Selzentry (maraviroc), Viracept (nelfinavir) and Rescriptor (delavirdine), formerly sold by Pfizer. Co-pay assistance programs allow companies to reduce the out-of-pocket costs of medications for people with health insurance.
GSK and Pfizer combined both companies' HIV programs into a single company, ViiV Healthcare, in the fall of 2009. Until now, however, the co-pay assistance programs of each company had remained separate as the two companies worked out the logistics of moving forward as a single entity.
The new ViiV co-pay program is a continuation of GSK's co-pay program, which covers the first $100 of a person's co-payment for each new GSK prescription. This means that people taking a former GSK product, such as Lexiva (fosamprenavir) and/or Epzicom (abacavir plus lamivudine), will continue to save up to $100 on their co-pay for each drug. Now people taking an antiretroviral formerly from Pfizer will qualify for the same co-pay assistance. Pfizer did not have a co-pay program in place at the time that ViiV was launched.
The program offers co-payment assistance to people with private health insurance in the United States, though not for residents of Massachusetts. It does not cover people without insurance or who have Medicare, Medicaid or who receive help from AIDS drug assistance programs (ADAPs). To learn more about the ViiV co-pay program, click here.*
*Note: The website for the program does not yet list Rescriptor, Selzentry or Viracept. These drugs, however, are included in the program.
Ros-Lehtinen Pleased With Her Score From The ADAP Advocacy Association?s Congressional Scorecard; Says The Fight Against HIV/AIDS Must Remain Bi-Partisan
Source: Congresswoman Ileana Ros-Lehtinen press release
February 4, 2010
Washington, DC (February 4, 2010) - Congresswoman Ileana Ros-Lehtinen, a senior member of the Florida Congressional Delegation, issued the following statement following the release this week of the ADAP Advocacy Association's Congressional Scorecard evaluating Members of Congress on their support for the AIDS Drug Assistance Program (ADAPs). The Congressional Scorecard ranked Members of the House and Senate on their votes and support for legislation related to ADAPs and HIV/AIDS advocacy in general.
Congresswoman Ros-Lehtinen received a "Pass with Honors Grade."
[Photo: Rep. Ileana Ros-Lehtinen seen discussing the Early Treatment of HIV Act (EHTA) with Brandon M. Macsata, CEO of the ADAP Advocacy Association]
"HIV infection doesn't discriminate based on one's partisan affiliation, therefore it is incumbent on our elected lawmakers in the US Congress to put partisanship aside to better fight HIV/AIDS in America," argued Brandon M. Macsata, CEO of the ADAP Advocacy Association. "Representative Ileana Ros-Lehtinen has continually demonstrated her leadership to improve access to care for people living with HIV/AIDS - including her strong support of the AIDS Drug Assistance Program."
Macsata further said of Ros-Lehtinen's "Pass with Honors" grade: "There is not a single piece of HIV-related legislation that doesn't have Representative Ros-Lehtinen's name behind it, including crucial reforms such as the Early Treatment for HIV Act or ADAP as the TROOP Act."
To learn more about the ADAP Advocacy Association's ADAP Congressional Scorecard, click here.
ACROSS THE NATION...
Spotlight on State HIV Funding Crisis at State Panel
Source: AIDS Foundation of Chicago
February 23, 2010
CHICAGO, IL - Long-time AIDS advocate State Rep. Sara Feigenholtz (D-Chicago) convened on January 22 an Illinois House panel on the state's HIV funding crisis. The AIDS Foundation of Chicago and Illinois Public Health Association coordinated testimony.
To watch video from the hearing, click here.
If additional state funding is not identified next fiscal year, advocates told the panel, hundreds of low-income people with HIV may be denied HIV medications through the AIDS Drug Assistance Program (ADAP) services or face a waiting list, hastening disability or death.
READ MORE...
County Takes Steps to Avert HIV Drug Crisis
By Tom Wilemon, The Daily News
February 2, 2010
MEMPHIS, TN - Shelby County has pumped in about $800,000 to help cover the cost of HIV medication for people in the Memphis metropolitan area after the Tennessee AIDS Drug Assistance Program late last year started putting them on waiting lists.
The one-time funding has allowed the state to take 247 people off the waiting list for the life-prolonging medications. As of the end of last week, 54 people were on the waiting list, including 17 from the Memphis area.
"The problem is certainly not solved," said Kim Daugherty, the executive director of Friends for Life, a nonprofit organization that assists people living with the HIV virus. "I would call this a Band-Aid, a giant Band-Aid for a period of time."
Funding pocket
The community planning council that oversees the distribution of Ryan White Part A funds in the Memphis metropolitan area voted to augment the AIDS Drugs Assistance Program (ADAP) after the state Department of Health began putting people on waiting lists in November because the program had reached enrollment capacity.
"They are the folks that tell us how we spend the $6 million that we get from the federal government," said Dorcas Young, program manger of the Ryan White Part A program for Shelby County. "I don't get to sit in my office and decide we're going to fund this, this and this. I have to do what the planning council says for me to do."
The county this year received $6,027,542 in Ryan White funding, a distribution based on the 6,673 people in the eight-county metropolitan area living with HIV and AIDS as of Dec. 31, 2008. The $800,000 was money that had not been spent.
"In light of the waiting list that was going on with the state, the group decided let's put some additional funding into the ADAP category," Young said.
Funding for the program's new fiscal year, beginning in March, is not known but will be based on updated numbers for people diagnosed with the virus, Young said.
Young urged people to get tested for HIV, regardless of the funding picture for the medications.
"Just because there has been a situation with a waiting list, people should not be afraid to get tests or think they don't have options for care," Young said. "We've worked hard in this community. One thing we've done is built up a local pharmaceutical program. We're able to provide drugs for clients who may not be able to get on the state ADAP program immediately. We can give them temporary medications until either they get off the waiting list for ADAP or they are able be linked up with one of the patient assistance programs offered by the pharmaceutical companies."
'Quality and dignity'
HIV continues to spread in the Mid-South, an area the federal government has designated Memphis Transitional Grant Area (TGA). The Memphis TGA includes Tate, Marshall, Tunica and DeSoto counties in Misssissippi, Crittenden County in Arkansas and Shelby, Tipton and Fayette in Tennessee.
This area became available for Ryan White Part A federal funding in 2007.
"Our numbers continue to grow," Young said. "We probably will move into the next category (for federal funding)." A TGA is a smaller urban area that's been impacted.
When you get to an area like New York and Miami and your huge cities where there are a lot of people so there is a lot of HIV infection, those are called Eligible Metropolitan Areas.
"We have been told on several occasions that Memphis is moving toward the EMA category even though we are a smaller metropolitan area. I think that kind of sheds light on the fact that the epidemic is increasing steadily in our community."
State, local and federal officials are currently working to devise a method to keep the ADAP program on track.
"We are all working together currently to try to put some plans into place where we're able to just ... better maximize the resources that we have in the whole state to make sure the state can concentrate on taking care of drugs for folks and we can pick up those essential services for folks locally in our community, where we don't have to have a situation where we're trying to patch something up at the end of the year.
"We don't want the crisis to come up constantly every year."
Daugherty said the people served by Friends for Life have welcomed news of the county coming through with funding.
"People are just so thankful to be able to get the help they need to live, literally to live," she said. "Without the medication, people would just become sicker and die. This medication will help people live a life, and a life with quality and dignity."
Florida AIDS Insurance Program Runs Short of Cash; Layoffs drive more patients to seek help maintaining health coverage
By Bob LaMendola, Sun Sentinel
January 28, 2010
FORT LAUDERDALE, FL - A Florida program that prevents HIV/AIDS patients from losing their health insurance has been swamped by people laid off from their jobs and for the first time in years had to start a waiting list.
Health officials said the AIDS Insurance Continuation Program is struggling with a money shortage that has hit hardest in South Florida, where almost 50,000 people are living with HIV. So far, there is no simple long-term solution in sight.
As a stopgap fix, local HIV planners siphoned more than $1 million from other services to preserve the insurance of the 143 Floridians on the waiting list.
But in the months needed to do so, some lost coverage and were forced onto public health care such as Florida Medicaid and the federally funded Ryan White program, which cost taxpayers four times more per patient than the insurance subsidies.
Also, officials worry that uninsured HIV patients will skip taking the medications, which keep them from progressing to AIDS and help prevent the virus from mutating in ways resistant to drugs.
"If we don't fix this, it will waste our precious dollars," said Mary Piper Kannel, chairwoman of the Palm Beach County HIV Care Council. "It's so much better for the entire system if we can keep people on their private insurance."
"People fell through the cracks," said Jerry Hoinacki, a manager at the Wellness Center of South Florida, a nonprofit group in Wilton Manors that enrolls people in the program. "It has been a hardship. They had to pay those big premiums out of their pockets, or they skipped treatment."
The AIDS Insurance Continuation Program helps low- to moderate-income HIV/AIDS patients by paying as much as $750 a month of their health insurance premiums, including COBRA coverage after job losses, plus up to $2,500 a year in co-pays. About 2,600 now benefit.
All last year, HIV-positive people who lost their jobs flocked to the program to avoid becoming uninsured, said Robert C. Sandrock, director of the AIDS Insurance Continuation Program.
Also, only a few in the program were able to find jobs and end their subsidies.
"They can't let their coverage lapse because they'll never get private insurance [from another company] as long as they have HIV," said Kathleen Cannon, vice president at Broward House, an agency that enrolls people in the AIDS Insurance Continuation Program.
The $13.9 million program came up $1.5 million short as of July 1, and the Florida Department of Health had to take the money from other services to avoid dropping people from the program. But with no money to add new patients, the state started the waiting list in August.
Broward has the state's largest waiting list with 35. Palm Beach County avoided the problem until last month but now has 12 on the list.
The Broward Health Department diverted $235,000 from HIV services in December to keep the 35 covered for now, and Palm Beach redirected federal grant dollars to cover its 12.
Officials are not sure how long the stopgap money will last.
To end the waiting list in the state budget year that will start July 1, officials said, the program must find unused HIV money, land an extra-large federal grant for 2010 or receive an additional $1 million in a state budget projected to be several billion dollars short.
"It's a maybe," said Tom Liberti, the state HIV/AIDS chief. He said the state also will struggle to avoid starting a waiting list for the AIDS Drugs Assistance Program, which helps about 15,000 HIV patients who can't afford their medicine.
Without a long-term fix for the AIDS Insurance Continuation Program, Liberti said, counties will have to make "painful decisions" to take more money from other HIV services, such as food, transportation, substance abuse and prevention education.
Said Kannel: "We're talking about services that get people through the day-to-day. They're all needed. What do you take away?"
Other news of interest
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