Leaders Write to President on Behalf of HIV/AIDS Funding
D.C. -- Leading congressional Democrats today called on the Bush
Administration to adequately fund access to care, treatment and
life saving medications for uninsured and under-insured people living
Under an ambitious
new initiative, Advancing HIV Prevention, the Centers
for Disease Control and Prevention (CDC) is promoting HIV testing
with the goal of diagnosing Americans who are currently unaware
that they are infected with HIV. However, the Bush Administrations
budget fails to provide resources for all the services in the Ryan
White CARE Act to treat these newly diagnosed patients.
Ryan White CARE Act programs provide the foundation for therapies
and services for low-income individuals with HIV and AIDS, including
access to needed medications through the AIDS Drug Assistance Program.
was signed by House Democratic Leader Nancy Pelosi, House Democratic
Whip Steny Hoyer, Rep. Henry A. Waxman, Ranking Member of the Government
Reform Committee, Rep. Barney Frank, Rep. Sherrod Brown, Ranking
Member of the Energy and Commerce Subcommittee on Health, Rep. Donna
M. Christensen, Chair of the Congressional Black Caucus Health Braintrust,
Rep. Barbara Lee, Chair of the Congressional Black Caucus Task Force
on Global HIV/AIDS, and Rep. Tammy Baldwin.
The following is the full text of the letter:
The Honorable Tommy G. Thompson
Secretary of Health and Human Services
U.S. Department of Health and Human Services
200 Independence Avenue, SW
Washington, DC 20201
Dear Mr. Secretary:
We are writing
to ask you to ensure that the new initiative to increase HIV testing
that is being sponsored by the Centers for Disease Control and Prevention
(CDC) will not leave thousands of Americans with a diagnosis of
HIV infection but without access to life-saving medications and
There is a
gap between CDCs public health efforts and the Presidents
budget for the Ryan White CARE Act. On one hand, CDC is promoting
HIV testing in the hopes of diagnosing Americans who are currently
unaware they are infected. This campaign will create new demand
for HIV treatments and medical care. On the other hand, the Presidents
fiscal year 2005 budget asks for insufficient HIV/AIDS funding including
less than one-sixth of the increase needed to ensure that
all HIV-positive Americans have access to essential therapies.
is unacceptable. While CDCs testing initiative may be important
to slowing the spread of HIV, it should be matched by efforts to
help those diagnosed with HIV to live longer, more productive lives.
We urge you to intervene to assure that the Presidents budget
adequately funds the Ryan White CARE Act, including AIDS drug assistance.
new initiative, called Advancing HIV Prevention, was
launched in early 2003. The premise is simple: because Americans
who do not know they are infected are believed to be more likely
to pass HIV to others, improving the diagnosis of HIV has the potential
to slow the course of the epidemic.1
early detection, CDC is pursuing a wide and ambitious agenda. CDC
is funding community-based organizations to test for HIV in non-medical
settings such as correctional facilities and is leading a national
campaign to encourage health care providers to offer routine HIV
testing.2 The agency has already purchased and distributed 250,000
rapid HIV tests and has broadcast via satellite a series of educational
programs to thousands of health care providers.3 The agencys
goal is to reduce the number of Americans who are unaware of being
infected to less than 5% of all those who are infected.4
- but unaddressed - outcome of this initiative will be a marked
increase in the demand for HIV treatment as new diagnoses are made.
The CDC hopes to ensure that every person with HIV infection
has the opportunity to get tested, has access to state of the art
medical care, and ongoing prevention services.5 However, while
the CDC plan will increase testing and diagnosis, the Administration
has not made a corresponding commitment of resources to assure access
to medication and primary medical care, under the Ryan White CARE
Act, for those diagnosed through this initiative.
the Ryan White CARE Act in 1990 to assure access to HIV/AIDS care
for all Americans. Title I provides funds to areas hit the hardest
by the HIV/AIDS epidemic for outpatient care and case management.
Title II funds grants to states to improve the quality, availability,
and delivery of health care for HIV-infected individuals. Title
III funds nonprofit groups to provide primary care, early intervention,
and capacity-building and planning services. Title IV provides funds
to meet the special needs of women, infants, and children living
While the CDC
initiative will increase demand for all Ryan White CARE Act services,
the impact will most clearly be seen in those programs funded by
Title II, which includes the AIDS Drug Assistance Program (ADAP).
Originally created by Congress in 1987 to help states purchase AZT
for uninsured Americans with AIDS,6 ADAP was moved to the Ryan White
CARE Act in 1990 to provide for a range of HIV/AIDS treatments.
More than a decade later, ADAP still serves as a key safety net
across the country. In June 2002, ADAP served more than 80,000 Americans
with 257,000 prescriptions.7
ADAP suffers from substantial underfunding and state-to-state variation
in the drugs covered. Despite federal spending of $714.3 million
in fiscal year 2003, there are about 800 people waiting to be enrolled
in drug assistance programs and 15 states with waiting lists or
other cost-containment strategies that impact access.8
In 2003, the
National Alliance of State and Territorial AIDS Directors (NASTAD)
estimated that an increase of $280 million was needed in the fiscal
year 2004 budget to provide for those waiting to receive ADAP services
and to cover all effective treatments.9 This estimate did not
include the additional costs of drugs for new patients diagnosed
because of the CDC initiative. After NASTADs ADAP Crisis Task
Force negotiated $65 million in discounts and rebates from pharmaceutical
companies, and Congress increased ADAP funding by $34.5 million
in fiscal year 2004, a gap of $180.5 million still remains.
assumptions, it can be estimated that an additional $45.3 million
will be needed in fiscal year 2005 to fund ADAP just to care for
those diagnosed as a result of the CDC initiative.10 This figure
is very likely an underestimate.11
however, has proposed just a $35 million increase in ADAP funding
for fiscal year 2005.12 This increase does not come close to matching
the $180.5 million ADAP shortfall estimated by NASTAD, and it does
not match the estimated $45.3 million projected ADAP need for funds
due to the CDC initiative. It provides less than one-sixth
of the total $225.8 million increase needed for ADAP next year.
The Presidents budget also fails to increase other elements
of Ryan White CARE Act funding adequately.
to provide necessary funds for HIV/AIDS care, the Administration
is risking the success of the CDCs HIV testing initiative.
Patients and providers may be less likely to test if lifesaving
medications cannot be obtained. Communities may be reluctant to
partner with CDC to encourage widespread testing while many of their
citizens are languishing on ADAP waiting lists.
We understand that the CDC/HRSA Advisory Committee on HIV and STD
Prevention and Treatment recently asked HHS to model the impact
of the CDC initiative on demand for ADAP services. Analysis of this
gap by HHS is critically important. However, there is already ample
evidence to justify a major increase in the Presidents fiscal
year 2005 budget.
We urge you
to reverse this retreat from critical, life-saving HIV care. At
a time when this Administration is pursuing a major commitment to
AIDS overseas, it is wrong to overlook the epidemics sufferers
at home. We look forward to receiving your response to this letter.
Steny H. Hoyer
Henry A. Waxman
Ranking Minority Member
Committee on Government Reform
Member of Congress
Ranking Minority Member
Subcommittee on Health Committee on Energy and Commerce
Donna M. Christensen
Health Brain Trust
Congressional Black Caucus
Task Force on Global HIV/AIDS
Congressional Black Caucus
Member of Congress
1 Centers for Disease Control and Prevention, Advancing HIV Prevention:
The Science behind the New Initiative (2003) (online at http://www.cdc.gov/hiv/partners/ahp_science.htm).
2 Centers for Disease Control and Prevention, supra note 1.
3 Centers for Disease Control and Prevention, AHP Initiative Quick
Facts (Jan. 12, 2004) (online at http://www.cdc.gov/hiv/partners/QuickFacts.htm).
4 Centers for Disease Control and Prevention, HIV Strategic Plan
through 2005 (2001) (online at http://www.cdc.gov/hiv/partners/psp.htm).
5 Centers for Disease Control and Prevention, Letter on the Initiative
to CDC Colleagues (Apr. 21, 2003) (online at http://www.cdc.gov/hiv/partners/ahp_colleague.htm).
6 Henry J. Kaiser Family Foundation, AIDS Drug Assistance Programs
7 National Alliance of State and Territorial AIDS Directors, Kaiser
Family Foundation, and AIDS Treatment Data Network, National ADAP
Monitoring Project Annual Report (Apr. 2003).
8 National Alliance of State and Territorial AIDS Directors, ADAP
Watch (Jan. 22, 2004) (online at www.nastad.org).
9 The $280 million estimate included projected growth in ADAP enrollment
absent the CDC initiative, unmet need within the program, costs
to treat HCV, costs of the new drug therapies, and ending the waiting
list. National Alliance of State and Territorial AIDS Directors,
AIDS Drug Assistance Program (ADAP) FY2004 Projected Need (2003)
(citing a figure of $280 million prior to discount of $65 million
obtained from pharmaceutical companies); E-mail communication from
NASTAD to Government Reform Committee minority staff (Jan. 23, 2004)
(citing $65 million discount obtained from pharmaceutical companies).
10 This calculation is explained in an addendum to this letter.
11 There are several reasons why this figure is very likely an underestimate.
First, the CDC initiative may be more successful than anticipated.
If CDC gets all the way to its goal over four years, the costs will
double. Second, because the CDC initiative is targeting patients
who may not have usual sources of medical care, the percentage requiring
the services of the AIDS Drug Assistance program may be considerably
higher than 18%. If half of those diagnosed need drug assistance,
the treatment costs will nearly double. Third, the estimate is based
on average current costs, which may reflect underfunding of the
program in some states.
12 The Presidents FY2005 proposal of $784 million is $45 million
more than his FY2004 proposal of $739 million, which was $10 million
less than what Congress provided for ADAP in FY2004. Department
of Health and Human Services, President Proposes Increase in Minority
AIDS Funding (Jan. 16, 2004); Bush to Seek More for AIDS Programs,
Washington Post (Jan. 15, 2004).
Estimating the Center for Disease Control and Preventions
Testing Initiatives Impact on the AIDS Drug Assistance Program
The cost to
ADAP of the CDC initiative can be estimated by:
Number of Patients
Diagnosed As a Result of CDC Initiative X % of Those Diagnosed Who
Will Need Drug Assistance X Average Federal Cost of Drug Assistance
estimate of the number of people who will be diagnosed with HIV
next year because of the CDC program is 23,750. This is based on
the CDCs goal of reducing the number of Americans who are
unaware of being infected to less than 5% of all of those infected,
or approximately 40,000 people. There are now estimated to be 230,000
Americans who have undiagnosed HIV infection. Meeting this goal
will require relatively stable trends in new infection and routine
diagnosis plus 190,000 extra diagnoses over time. The CDCs
goal was set in 2001 for achievement in 2005. Now that the implementation
of the Advancing HIV Prevention initiative has begun, a conservative
estimate would anticipate that CDC could get halfway to its
goal with an additional four years past its 2005 target.
This would require an extra 23,750 diagnoses per year. Centers for
Disease Control and Prevention, HIV Strategic Plan through 2005
(2001) (online at http://www.cdc.gov/hiv/partners/psp.htm)
(sets goal of less than 5% of those with HIV unaware of infection).
Centers for Disease Control and Prevention, CDCs New HIV Initiative
(2003) (online at http://www.cdc.gov/hiv/partners/question.htm)
(estimates approximately 230,000 Americans with undiagnosed HIV
estimate of the percentage of those identified by the CDC initiative
who will need drug assistance through ADAP is 18%. This is the proportion
of all HIV-positive Americans in medical care who receive medications
through ADAP. National Alliance of State and Territorial AIDS Directors,
Kaiser Family Foundation, and AIDS Treatment Data Network, National
ADAP Monitoring Project Annual Report (Apr. 2003) (citing 80,035
clients receiving medications in June 2002); Many in US with HIV
Dont Know It or Seek Care, New York Times (Feb. 26, 2002)
(citing CDC report that 447,000 Americans have HIV and are in care).
cost per additional person in ADAP can be estimated conservatively
by current spending, because many states formularies are restrictive.
Based on data from June 2002, the average annual cost of drug assistance
per person is $10,601. National Alliance of State and Territorial
AIDS Directors, Kaiser Family Foundation, and AIDS Treatment Data
Network, National ADAP Monitoring Project Annual Report (Apr. 2003)
(citing June 2002 expenditures of $70,705,142 for 80,035 clients).
lead to the conclusion, using the equation above, that costs for
ADAP attributable to the CDC initiative can be conservatively estimated
at 23,750 patients diagnosed X 18% who need drug assistance X $10,601
per person = $45.3 million.