May 12, 2006

Announcements
1. AIDS Action Announces New Officers

CARE Act in Brief
1. HELP and Energy and Commerce Committees Release Information about Reauthorization
2. AIDS Action Comments on CARE Act Draft Bill

Announcements
1. AIDS Action Announces New Officers
On Monday, May 8, 2006, AIDS Action announced the new officers for both the AIDS Action Council and the AIDS Action Foundation elected at the annual board meeting in March. Katy Caldwell, Executive Director of Legacy Community Health Services, Inc. (Legacy) in Houston, Texas was elected Chair of the Board of the AIDS Action Council. Joseph Interrante, Executive Director of Nashville Cares, was elected Vice Chair. Zoila Escobar, Vice President Strategic Development and Community Support of AltaMed Health Services Organization, in Los Angeles, California, was elected Secretary, and Former Board Chair Craig Thompson, Executive Director of AIDS Project Los Angeles, will be Treasurer.

Upon her election Ms. Caldwell stated, “I am pleased to take on this leadership role for AIDS Action Council. There are many important issues under discussion right now, like the reauthorization of the Ryan White CARE Act, the shrinking HIV funding portfolio, HIV prevention, and research on vaccines and microbicides.” She added, “AIDS Action is in the forefront of HIV advocacy in Washington, and I am pleased to be able to build upon the work of our immediate past chair Craig Thompson.”

Rebecca Haag, Executive Director of AIDS Action’s Council and Foundation said she was pleased to see that the new officers included those who had previously served in leadership roles and had significant experience with the organization. “The Board leadership reflects the great diversity that we have in our organization and includes perspectives from different geographic locations as well as both community services and medical based service models.” She continued, “I am pleased to have a leadership team with such a depth of experience and expertise, and look forward to working with them on the very significant challenges that face our advocacy work on behalf of those living with HIV/AIDS.

Also in March, the AIDS Action Foundation also elected Kenneth Malone of the Legacy Community Health Services as chair. Mr. Malone said, “I am excited about the leadership of the Foundation Board as we continue to research innovative ways to connect HIV positive individuals to quality care. In partnership with the HIV/AIDS Bureau at the Health Resources Services Administration, AIDS Action Foundation has been investigating best practices in connecting ex-offenders to HIV care as well as innovative connections to quality HIV care in rural settings. The end result of this research will help to increase the number of HIV positive people enrolled in quality care throughout the United States.”

The new AIDS Action Council and Foundation Board Members will serve a one-year term until March, 2007.

AIDS Action’s official press release can be found here.

CARE Act in Brief
1. HELP and Energy and Commerce Committees Release Information about Reauthorization
On Tuesday, May 9th, staff members of the Senate Health, Energy, Labor and Pensions (HELP) Committee and the Energy and Commerce Committee released a timeline for possible completion of the Ryan White CARE Act reauthorization process along with an outline of issues that the committee had included in a draft reauthorization bill. On the following day, the two Committees released a draft bill. This is “Health Week” in the Senate. AIDS Action submitted comments on the draft bill on Friday, May 12th. (See below). AIDS Action is attaching both the outline of issues and the draft bill to this Weekly Update.

The current timeline for reauthorization follows. In the Senate, the HELP Committee announced a draft bill that reflected the agreement but was expected to be a placeholder for a final bill to be introduced in the Senate. On May 16, the HELP committee planned to introduce the final bill. Due to Senate rules, the final bill needed to be introduced 24 hours before it is marked up in committee – a markup is the process by which committee members make changes to the bill before taking a final vote to send it to the Senate Floor. On May 17th the Senate currently plans to hold its markup. It is unknown when the full Senate would vote on the bill.

In the House of Representatives Energy and Commerce committee there was a little less information. Committee staff stated that June 19th was "Health Week" in the House and that they would like to have a final vote on the reauthorization bill during that week. The RWCA reauthorization bill would therefore need to be introduced and marked up prior to the week of June 19th. The Energy and Commerce Committee staffers also said that they planned to have a community "roundtable" before introduction. AIDS Action has already told House members that we would like to participate and they have said that we will be invited. Of course we will keep all of you informed. Both the House and Senate are working in a bipartisan/bicameral process to have an identical final bill that would not need to go to conference.

2. AIDS Action Comments on CARE Act Draft Bill
On Friday, May 12th, AIDS Action submitted the following comments to the Senate HELP and House Energy and Commerce committees:

On behalf of AIDS Action Council, I wish to thank you and the members of your staff for drafting legislation to reauthorize the Ryan White CARE Act. The Ryan White CARE Act has been a bipartisan bill since it was first authorized in 1990 and we are appreciative that you have continued in that tradition. There are now more than a million people in the U.S. living with HIV of whom hundreds of thousands rely on the CARE Act for all or part of their treatment and care. Even as demand for services rise in certain geographic areas and within specific communities, the needs have not lessened in the major metropolitan areas in which 80% of those living with HIV/AIDS currently reside. We applaud your efforts to balance these needs in a manner that ensures the stability of the infrastructure that currently serves the affected population while beginning to address the areas of unmet need. Full commitment to eradicating HIV/AIDS in the U.S. will ultimately mean allocation of additional resources and we look forward to working with Congress to assure that this is the ultimate goal.

AIDS Action continues to support the bipartisan and bicameral process in which you are engaged. However, without knowing the ultimate outcome of discussions about Core Medical Services and without having had an opportunity to review funding data based on the assumptions of this draft, AIDS Action is unable to take a specific position on the draft bill.

We are concerned about both the definitions of “primary/core medical care” (which we understand may be capped at 75%) and also about attempts to limit the definition of “non-primary/non-core” medical care in the remaining 25%. Any attempt to limit the ability of AIDS Service Organizations and our health allies to provide the needed care and support services to people living with HIV/AIDS would have a negative impact on addressing the epidemic. We urge the committees to come to a fair agreement that will allow HIV/AIDS service providers and local communities to perform their much needed work without undue regulation.

We feel compelled to say that after two years of hard work, today’s 5:00 p.m. deadline and the extraordinarily quick introduction and markup scheduled for next week may not allow the community proper consideration of a number of important issues. This is a complex bill and rigorously reviewing each line side by side with current law is a difficult undertaking that will not be thoughtfully completed by today’s deadline. More time is needed and we therefore urge you to consider postponing the markup on May 17th. With that said, AIDS Action wishes to offer the following initial comments on the draft bill:

General Comments:

Title Structure

• AIDS Action supports retaining the CARE Act’s structure of the four Titles, Part E (redefined) and Part F.

Minority AIDS Initiative

• AIDS Action strongly supports maintaining the Minority AIDS Initiative (MAI) both in the CARE Act and in other Department of Health and Human Services programs. We understand that the MAI funding is not included in base pools in creating the new tier structure in Title I and we support that decision. We also understand that the tri-caucuses are working to finish a proposal regarding the authorization of the Minority AIDS Initiative. AIDS Action supports the tri-caucus effort and urges the committee to ensure that proposal be included in the CARE Act.

Funding Issues

• AIDS Action has long expressed concern that areas which have built the necessary infrastructure to take care of HIV/AIDS not be destabilized by the Ryan White CARE Act reauthorization legislation. AIDS Action is particularly concerned about destabilization in Title I since it may lead to people living with HIV not being served. There needs to be an assessment of the impact on grantees and consideration of options to minimize disruptions to people living with HIV. We are therefore not able to comment on the effects of the reauthorization without seeing information about the funding effects on grantees in all Titles and Part F from the GAO or from the committee. We urge the committee to release this information as soon as it becomes available.
• AIDS Action understands that the committee will be adding authorization of appropriations sums. We urge the committee to ensure that all parts of the CARE Act are fully funded.

Specific Issues Related to the Draft Bill:

Page 2, Lines 6-11; MSA Boundaries

• “Definition—Section 2607(2)” says that “the boundaries of each metropolitan area shall be the boundaries that were in effect for each area for fiscal year 1994.” Although this may be accurate for EMAs currently funded under Title 1, it does not reflect the boundaries of metropolitan areas currently funded under Emerging Communities” that would become some of the metropolitan areas funded under Tiers 2 and 3 of the proposed Act. Those cities used the boundaries of the Metropolitan Statistical Areas as reflected in the 2000 Census—which of course makes sense since the EC program was created in the CARE Amendments of 2,000. These MSAs are larger than they were in 1994, when they reflected the 1990 Census. Reverting to the older boundaries would impact the eligibility of some of these communities and disrupt systems of care in those communities which could no longer use funds to serve individuals living in counties outside the MSA borders in effect in 1994. The language in Section 110 on “Transitional Grants for Other Areas” (Page 11, beginning Line 7 and continuing to Page 13, Line 4) does not provide a comparable definition of a “metropolitan area” for this section of the Act. It is likely that HRSA will interpret this language to require use of 1994 boundaries, leading to the disruptions mentioned above. AIDS Action recommends inserting language into either Section 101 or Section 110, clarifying that the boundaries of metropolitan areas that were not previously EMAs should be the boundaries in use for fiscal year 1994 or for fiscal year 2006, whichever are currently in use by the metropolitan area. An alternative is to use the boundaries in use when a metropolitan area enters into Title I.

Page 4, Line 13 -15 and Page 19 Line 1-4; Proxy for Established HIV Surveillance System

• AIDS Action notes that there may be one or more states which switched to names based reporting after 2000 and although certified by the CDC their HIV data has not fully matured. AIDS Action is also concerned that the 0.9 proxy may be too low. The GAO report from February of this year notes that the ratio of living HIV to living AIDS grows larger the longer a system matures and that states with the oldest systems may have a ratio above 1.5. This suggests that for those states just entering the certified system, the proxy may be too low and may result in under-funding these states. AIDS Action recommends use of the average factor associated with mature HIV name systems (1.1-1.2 – very mature systems range up to 1.5). If this cannot be done, states should be allowed an exemption process to show (possibly via CDC estimates or numbers) that they have a greater proportion of HIV than 0.9.

Page 4, Line 16 – 19 and Page 19 Line 4-6; Limit Reductions in Funding For Proxy and Non-Proxy States

• The committee has acted to ensure that no state which receives a proxy shall receive more than a 10% increase in funding over the previous year award. AIDS Action has heard that the committee’s intention is also to ensure that such states not receive more than a 10% reduction under the previous year’s award. We do not see language to that effect in the draft and urge that it be included. In addition we urge the committee to review the effects of transitioning to HIV on grantees (particularly in relationship to the potential lack of maturity of a young HIV reporting system) and act to include limits on reductions in funding to those grantees as well.

Page 7, Line 3 – 20; Unobligated Funds

• AIDS Action supports ensuring that unexpended and unobligated funds be retained in the CARE Act. AIDS Action recommends that unexpended funds should be returned to the Secretary only after two years since spending issues may arise during any single year creating unexpended funds which are expected to be spent on a particular service such as ADAP. AIDS Action supports ensuring that grantees which consistently are unable to expend funds receive immediate technical assistance from HRSA.

Page 8, Lines 19-23 and Page 29, Lines 3-6 and Page 37, Lines 15-18; Core Medical Services

• AIDS Action continues to recommend inclusion of as many medical services as possible in the definition of primary or core medical services. (Please see the attached list which we have previously sent). AIDS Action is particularly concerned that any such definition which does not include case management, substance abuse treatment or the list of services already recommended by HRSA will be inadequate to the task of treating people living with HIV. It is important the 75% cap and 25% remainder be taken out only after administrative funds (10%) and grant quality management funds (5%) are disbursed.
  
  AIDS Action is very concerned that limits not be placed on the remaining non-primary or non-core care for which 25% of funds are designated. Such funds should be spent at the direction of local public authorities. Due to the complexity of treatment and disease burden in difficult to reach places or low income populations, it is imperative that a number of services which cannot always be anticipated be available through the 25% remainder. Communities have proved adept at getting care to underserved communities and Congress should not micro-manage services or substitute its judgment for the judgment of local medical, health and community professionals in managing the treatment and care of people living with HIV/AIDS. AIDS Action and our many health allied professionals could not support a bill that did not include alcohol and other drug and mental health professionals, nutritional services, and more because the needs of HIV positive people would go unaddressed. We are ready to help the committee with any technical expertise that we can provide in this area.
  
  AIDS Action supports a waiver process for grantees that are able to demonstrate that there is no ADAP or primary care waiting list and that everyone with HIV is receiving core medical services. The waiver process must be reasonable. We recommend that the waiver be approved upon the grantee meeting conditions and therefore further recommend that the legislation require that the Secretary “shall” grant the waiver.

Page 9, lines 1-2; Demonstrated Need:

• AIDS Action recommends inserting language that “demonstrated need” be based on objective, comparable, measurable and weighted indices.

Page 19, Lines 13- 25 and Page 20 Lines 1-3; ADAP:

• AIDS Action appreciates the inclusion of development of a minimum level drug formulary including all anti-retrovirals as determined by the Public Health Service Guidelines. We urge the committee to include drugs to treat and prevent Opportunistic Infections (OIs) as well. AIDS Action does not believe that this will unduly burden the states, but certainly urges a reauthorization funding level high enough to ensure that all states will be able to meet this requirement. In conjunction with other organizations, AIDS Action agrees that raising the ADAP supplemental from 3% to 5% will be beneficial.
• AIDS Action supports the inclusion of a provision which would allow AIDS Drug Assistance Funds to count towards true out of pocket (TrOOP) expenses in Medicare Part D. AIDS Action supports inclusion of both federal and state funds towards TrOOP; however it is particularly concerned that funds originating with the states (currently more $253 million) should be allowed to count for TrOOP.

Page 23 Line 25 – Page 25 Line 22 Severity of Need Index

• AIDS Action is concerned about three things as the CARE Act moves to a “severity of need” model to make formula allocations.
  • First, any severity of need model must have actual community input in the development of a severity of need model. Although it is imperative that community members participate in the actual development of the model, the entire community must have a vetting process to ensure (beyond regulatory notifications) that ensure full community input.
  • Second, any severity of need model must be fully approved and vetted by Congress, not merely approved at the Secretarial level. We do not believe the current language is adequate in ensuring that Congress has the ultimate ability to review the Severity of Need Index.
  • Third, any severity of need index must have reliable client level data before it is implemented. The Secretary should be required to show that client level data across the nation is viable and comparable before moving to any Severity of Need Index.
  • Finally, AIDS Action notes that the transition structure to a Severity of Need Index in Title II has the potential to swing funds to particular state grantees only to see the funds swing back to other grantees when a new system is implemented. AIDS Action is unable to determine the effect of the transition period without access to data runs and is therefore not able to make a recommendation about how best to mitigate this potential effect. In lieu of making a recommendation AIDS Action urges the committee to guard against volatile funding swings occasioned by the anticipated transition to a Severity of Need Index.

Page 32 Lines 1-6 and Page 37, Lines 19-24; Payer of Last Resort

• AIDS Action supports ensuring the access of Native Americans to the CARE Act by modifying the payer of last resort to include the phrase “except for a program administered by or providing the services of the Indian Health Services.”
• AIDS Action understands that there have been instances in which individuals who are veterans have had difficulty accessing care because the Veterans Administration refuses treatment and sends the veteran to an HIV clinic. AIDS Action recommends that the committees clarify that the Ryan White CARE Act should be the payer of last resort with regards to the Veterans Administration.

Pages 38-43; Title IV program

• The Title IV program must remain focused on providing family centric care and ensuring the stability of families affected by HIV whether the affected individual or individuals are parents or children. Consequently AIDS Action opposes any effort to limit services solely to the infected family member.
• AIDS Action opposes mandatory testing programs of pregnant women and infants without consent. Such programs may discourage women from seeking medical assistance with pregnancy. AIDS Action supports voluntary testing programs with consent. Such volunteer programs have successfully reduced perinatal transmission in the United States without being made mandatory. For example in Massachusetts the transmission rate was successfully reduced to zero in a voluntary program. AIDS recommends keeping such programs voluntary.

Page 42, Lines 14-18 Administrative Cap on Title IV

• Due to the nature of the work and the size of Title IV grantees, a 10% cap is inadequate. AIDS Action urges the committee to reconsider the inclusion of a 10% administrative cap in Title IV.

Page 43, Line 3; Core Medical Services for Title IV

• Title IV of the CARE Act provides comprehensive, coordinated, family-centered services to uninsured and underinsured women, children, youth and families infected with or affected by HIV each year. Eighty percent of Title IV's consumers already have Medicaid and SCHIP to pay for their primary medical care and Title IV then funds services including additional medical care, psychosocial services, prevention, outreach and opportunities to access clinical research. This is inconsistent with the application of Core Medical Services to this Title and AIDS Action therefore recommends that Title IV be exempted from such requirements. If subject to Core Medical Services, AIDS Action strongly supports a reasonable waiver process for Title IV grantees.
• Title IV is a unique model of family-centered care which promotes better health. More than 53,000 patients access Title IV-funded services each year, which include medical care, psychosocial services, prevention, outreach and opportunities to access clinical research. Women, children, youth and families need a range of specialized, family-centered social services to stay in medical care and adhere to treatment regimens. These are their core services.

Page 44, Lines 13 through Page 46 Line 3, Coordination

• AIDS Action strongly supports the requirements to ensure that all agencies responding to the HIV epidemic, including HRSA, CDC, SAMHSA, HCFA coordinate on the implementation of HIV programs to enhance continuity of care and prevention services for individuals with HIV and supports the requirement that the Secretary of HHS consult with other federal agencies including the VA. AIDS Action supports the requirement for a biennial report concerning the coordination of Federal, State and local levels as well as state and local requirements to coordinate with other available programs including Medicaid.

Page 46 Line 19 – Page 47 line 2; Public Health Emergency

• AIDS Action supports giving the Secretary power to waive requirements of this title to respond to a public health emergency and the flexibility to spend up to 5 percent of Title I supplemental and Title II supplemental funds. AIDS Action understands that Hurricane Katrina affected areas continue to have issues meeting the requirements of the CARE Act and urge that Congress explicitly allow hurricane Katrina affected States and EMAs to waive any state match, maintenance of effort and WICY requirements.

Page 47, Lines 3-11; Prohibition on Funding, Programs, Materials Relating to Sexual Activity or Intravenous Drug Use

• HIV is a disease about sex and drugs. It cannot be prevented or adequately treated without addressing the issues of sex and drugs. Therefore AIDS Action continues its long-standing opposition to the inclusion of this language since it may limit the ability of AIDS Service Organizations and other to do outreach or to educate individuals who engage in sexual activities or intravenous drug use about prevention, treatment, care, or services for HIV.

Page 49 Line 1-51 Line 14 SPNS

• AIDS Action urges the committee to ensure that SPNS or other sources of funding continue to fund Native American HIV projects. This has been the only dedicated source of funding for Native American projects.

Page 51 Line 18 – Page 53 Line 25

• AIDS Action strongly supports the reauthorization and full funding of the AIDS Education and Training Centers. AIDS Action agrees with the inclusion of training for health professionals regarding Hepatitis B or Hepatitis C co-infected individuals.

Page 56 Line 21 – Page 58, Line 4

• AIDS Action agrees with the inclusion of provisions for counseling on Hepatitis A, B and C in appropriate sections of the CARE Act

The AIDS Action Weekly Update
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