| July
28, 2006
This Week in Washington
1. Equal Treatment for Children with HIV/AIDS Briefing
CARE Act in Brief
1. CARE Act Negotiations Continue
Announcements
1. Senate and House Recess until September 5
2. Child Custody Protection Act (S.403) Passes in the Senate
This Week in Washington
1. Equal Treatment for Children with HIV/AIDS Briefing
On July 26, 2006 The Global Health Council and the Elizabeth Glaser
Pediatric AIDS Foundation hosted a briefing and reception titled,
“Equal Treatment of Children: Turning the tide of the Pediatric
AIDS Pandemic.” The briefing was cosponsored by Senator Hillary
Clinton (D-NY) and Senator Richard Lugar (R-IN). There were five
speakers featured at this event, Dr. Mark Dybul, acting United
Stated Global AIDS Coordinator, Dr. Mark Kline, President of the
Baylor College of Medicine International Pediatric AIDS initiative,
Dr. Celia Christie-Samuels, director of the Kingston Pediatric
and Perinatal HIV/AIDS Program at the University of the West Indies,
and an HIV positive mother and son from Kingston, Jamaica. These
expert panelists discussed reasons for gaps in HIV treatment and
strategies for reaching the world’s HIV positive children with
the life saving medications they need. AIDS Action Staff member,
Anna Ford, Government Affairs Associate, was in attendance.
The briefing began with a welcome introduction
from Pamela Barnes, Chief Executive Officer of the Elizabeth Glaser
Pediatric AIDS Foundation and co-host Maurice Middleberg, Vice
President of Policy, Research, and Advocacy at the Global Health
Council. Dr. Barnes spoke about the Pediatric AIDS Pandemic stating
that there are currently 2.3 million children living with HIV
worldwide. Each year 700,000 babies are born with HIV. Without
treatment half of these children will die by age 2 and all will
die by age 5. Children represent 15% of all new infections, but
only 5% of those that are treated. Addressing inequity in treatment
for children is a priority for the Elizabeth Glaser Pediatric
AIDS Foundation and its partners, she told the audience.
Mr. Middleberg outlined three main goals of
the Global Health Council in their efforts to improve access to
HIV treatment in children. The first is strengthening the infrastructure
for access to basic health care for children world wide. Next
is promoting evidenced based prevention methods, especially for
women and girls. The Council’s third main pediatric focus is stimulating
political will to implement the already proven scientific strategies
for prevention of mother to child transmission (MTCT).
Clare, an HIV positive mother from Kingston,
Jamaica and her son Christopher (age 9) shared their personal
life story. (Clare and Christopher are pseudonyms used as protection
from stigma and discrimination in Jamaica). Clare said that her
“perfect life” came crashing down in 1998 when she realized that
she, her husband, and 10 month old son were all HIV positive.
Her husband died that same year, leaving her and her sick son
to live in poverty and ostracized by their community.
Christopher started treatment in 2001, but Clare
often could not afford to pay more than 7,000 Jamaican dollars
for his medications. Christopher was off his medication for months
at a time, leaving him sick, weak, and eventually resistant to
the therapy. After the Global Fund offered support to Jamaica,
Clare and her son were better able to afford strong anti-viral
medications. Christopher spoke to the group stating that his medications
are “magic”. He takes them everyday and is a healthy, active,
and athletic fourth grader. Clare is now an adherence counselor
in Jamaican hospitals, helping others to achieve the success and
happiness she and her son have found after gaining access to HIV
care and treatment.
Dr. Christi-Samuels MD, Christopher’s doctor,
recently received the Elizabeth Glaser Pediatric AIDS Foundation’s
International Leadership Award. Dr. Christi-Samuels treats 221
pediatric AIDS patients at 9 centers as the director of the Kingston
Pediatric and Perinatal HIV/AIDS Program at the University of
the West Indies. She sees 94% of all children receiving HIV treatment
in Jamaica.
She spoke about the challenges she faces in
treating HIV positive children and her suggestions for a solution.
She said that currently there are only limited drug formulations
for children and that alternative treatment options are few. She
also noted a need for research for pediatric medications and dosages.
The children that she treats have dire social needs as well HIV
treatment needs. Dr. Christi-Samuels advocates for increased access
to education, adoption of orphans, and educational campaigns and
counseling as HIV positive youth transition into adulthood. She
also said that Jamaica needs earlier testing for infants, expanded
educational programs, the implementation of MTCT programs similar
to that of the US, and maintenance of the Global Fund’s gift to
developing countries.
Mark Dybul, who is currently the acting United
Stated Global AIDS Coordinator (and was recently nominated to
take on the position permanently), spoke about the leadership
of the President's Emergency Plan for AIDS Relief (PEPFAR) in
addressing the pediatric AIDS pandemic. He highlighted PEPFAR’s
successes in the pediatric pandemic. To date, PEPFAR has given
$63 million towards Pediatric AIDS services, bringing support
and treatment to 11,000 children.
As PEPFAR continues to address the daunting
challenge of Pediatric AIDS worldwide, he outlined PEPFAR’s next
steps and future agenda. The first priority in PEPFAR’s plan is
further prevention of MTCT. National guidelines in PEPFAR countries
need to be rewritten and more therapies to reduce MTCT need to
be introduced. The second priority is improving testing services
for pregnant women. PEPFAR encourages “opt out” testing for all
pregnant women, which furthers the need for greater access to
rapid testing. Opt out testing increases the amount of pregnant
women testing for HIV from 30-40% to 80-90%. Finally, PEPFAR has
created pediatric care packages which include prevention and treatment
not only for HIV, but for tuberculosis, malaria, nutritional needs,
access to safe water, income generating activities for orphans,
and mechanisms to connect orphans to their relatives.
Finally, Dr. Kline repeatedly noted the need
for proportionate funding for Pediatric HIV/AIDS. According to
Dr. Kline, expanding the number of children in treatment, drug
companies will have incentives to make more and better medications
for children. He made his point by telling the audience that 1900
children are infected with HIV every day worldwide. “A child dies
of AIDS every minute,” he said.
CARE Act in Brief
1. CARE Act Negotiations Continue
Republican and Democratic House and Senate staffers continue to
work together to try to reach a final consensus on the Ryan White
CARE Act reauthorization bill. The bill's negotiators (House and
Senate Republicans and Democrats plus the Administration) held
a meeting with House and Senate staffers on July 14th. The negotiators
appear to be spending much of their time attempting to resolve
an impasse on formula allocations, which has been a major source
of controversy.
Most recently negotiators have said that they
plan to switch to HIV reporting for formula allocation purposes,
but to allow states which are not currently certified by the CDC
to use their code systems until they are certified. Those states
using a code based system will be required to discount their reports
by a percentage to account for duplication rates with other states.
Initially the rate was planned to be 14%. States that think their
systems do a better job of de-duplicating HIV/AIDS cases would
be able to apply for a waiver from the Secretary.
There seems to be a pattern in which the negotiators
manage to agree on a formula, but then have not been able to sell
it to other staffers whose states or jurisdictions seem likely
to suffer major funding losses. Staffers continue to wait for
data from the Government Accountability Office (GAO) and the Department
of Health and Human Services (HHS). AIDS Action has heard that
they will not be able to attain data for a full five years as
negotiators had requested, but rather only for FY 2008.
AIDS Action understands that negotiators are
currently working on a new version of the draft reauthorization
bill. The bill has not been released to staffers and seems unlikely
to become available before Congress returns from August recess
in September.
The next step in the bicameral, bipartisan reauthorization
process is for the House Energy and Commerce committee to hold
a markup and pass a reauthorization bill. (The Senate Health,
Education, Labor and Pensions (HELP) Committee passed their version
of the CARE Act in May). Following the Energy and Commerce markup,
both the full House and the full Senate will need to have a final
vote on the bill. Staffers working on the issue will seek to make
sure that both the House and Senate bills are identical.
If they do pass an identical bill, the House
will place the bill on the suspension calendar which will require
a 2/3 vote and will ensure that amendments cannot be added. Assuming
the most important disagreements have been resolved, the House
should have no trouble achieving a 2/3 vote. The Senate has stated
that they will try to place the bill on the unanimous consent
calendar (which would require that no Senator opposes the bill).
Staffers still say that they are optimistic
that a bill can be passed before Congress recesses in October
to campaign for the November elections.
Announcements
1. Senate and House to Recess until September 5
The U.S. House of Representatives begins its annual August recess
today, July 28th. The Senate will begin its recess on August 4th.
Both Houses of Congress will return to Washington on Tuesday,
September 5. Upon returning from recess Congress is expected to
work on HIV related legislation including the reauthorization
of the Ryan White Care Act and the Labor, Health Human Services
and Education Fiscal Year (FY) 2007 Appropriations Bill.
Most members of Congress will spend time in
their home jurisdiction or state during the August recess. The
recess provides constituents with an opportunity to contact and
meet their elected officials while they are at home. AIDS Action
urges our members to meet with their elected officials and to
let them know about the importance of funding for HIV treatment
and care and the need to reauthorize the CARE Act. Constituents
can reach their Members of Congress by calling their district
offices and scheduling a meeting with the officials or by attending
a town-hall meeting at which your legislators are scheduled to
appear.
For more information about how to schedule and conduct a meeting
with members of Congress see AIDS Action’s publication, “Advocacy
Basics” here: http://www.aidsaction.org/legislation/pdf/advo_basics_meetings.pdf
Contact information for Senators and Representative
can be found by zip code at http://capwiz.com/aac/dbq/officials/.
2. Child Custody Protection
Act (S.403) Passes in the Senate
The Child Custody Protection Act (S. 403) passed in the Senate
yesterday by a vote of 65-34. Senator Frank Lautenberg (D-NJ)
offered a teen pregnancy prevention amendment to the bill that
would have funded programs focused on teen pregnancy prevention,
including medically-accurate, comprehensive sexuality education.
The amendment is similar to comprehensive sexuality education
legislation in the Responsible Education about Life (REAL) Act
(S. 368 and H.R. 2553) also introduced by Senator Lautenberg in
the Senate and Representative Barbara Lee (D-CA) in the House.
The amendment failed by a vote of 48-51. The House previously
passed related legislation called the Child Interstate Abortion
Notification Act (H.R. 748). After a conference committee process,
the house and the senate are expected to pass a final version
of the bill, and the President is expected to sign the bill into
law. Once the Child Custody Protection Act becomes law it is expected
to severely limit access to adolescent’s access to reproductive
health care services and education.
To see how your Senator voted on the Lautenberg
amendment, go to:
http://www.senate.gov/legislative/LIS/roll_call_lists/roll_call_vote_cfm.cfm?congress=109&session=2&vote=00214
To see how your Senator voted on the Child Custody
Protection Act (S. 403), go to:
http://www.senate.gov/legislative/LIS/roll_call_lists/roll_call_vote_cfm.cfm?congress=109&session=2&vote=00216
The AIDS Action Weekly Update
The Weekly Update is written
with a mind toward the interests of our members. If you are interested
in membership with AIDS Action, we invite you to contact members@aidsaction.org.
AIDS Action works
to end the HIV epidemic by advancing public policies that
prevent new infections, provide care for people living with
HIV, and support the search for a cure. AIDS Action serves
as the national voice for people living with HIV and represents
AIDS service organizations, health departments, and a diverse
network of community-based organizations across the country. |
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