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	- Sandra Amaral, MD, MHS, Children’s Hospital of Philadelphia

“Among children with end-stage kidney disease, death risk is much lower for those who receive a kidney transplant after their diagnosis than for those who remain on dialysis.”

Philadelphia — During a press conference at Kidney Week 2011, Sandra Amaral, MD, MHS, Children’s Hospital of Philadelphia, stressed how important it is for pediatricians and pediatric nephrologists to promote the process of kidney transplant to happen as soon as possible in children who are diagnosed with ESRD. She explained evidence suggests that through a transplant, it will improve the mortality and morbidity in the children compared to being on dialysis; children on dialysis have a much higher risk of death than those who receive a kidney transplant.

Amaral shared the results of a study in which she and her fellow researchers evaluated mortality rates after new diagnoses of end-stage renal disease (ESRD) to see if they varied by race. A secondary focus of the study was “to examine whether insurance status and/or neighborhood poverty influenced racial differences” (Amaral, PowerPoint). Additionally, Amaral and her colleagues sought to answer two questions:

		Who are those patients who are remaining on dialysis and having this higher risk of death?

Using the United States Renal Data System national ESRD database, Amaral et al. identified 8,146 children who met the inclusion criteria and tracked them through September 2009. During that time, 896 (approximately 10%) of the children died before receiving a transplant; and of the 896, 735 (82%) died even before making the waiting list, and 161 (18%) died while on the waiting list.

Upon reviewing the results, Amaral et al. found that the patients who died were most likely to be black children with public insurance and living in poorer neighborhoods than Hispanics and whites. In fact, the Hispanic population had the lowest risk of mortality regardless of insurance status. When comparing the insurance status between blacks and whites, the data showed that uninsured blacks had a 78% higher mortality risk than uninsured whites.

Based on these findings, the Amaral et al. learned the following:

		Health insurance may impact the mortality rate

		There was no significant difference by race in the neighborhood

		Need more studies to confirm their findings

"I think that this study brings to life that there may be issues in patient access to care and so it’s possible that the reason patients aren’t even getting wait-listed after their diagnosis is that they’re too sick,” said Amaral. “Perhaps if they were in the system receiving pediatric sub-specialty care earlier, we could prolong their lifespan and improve their health.”

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During a press conference at Kidney Week 2011, Sandra Amaral, MD, MHS, Children's Hospital of Philadelphia, stressed how important it is for pediatricians and pediatric nephrologists to promote the process of kidney transplant to happen as soon as possible in children who are diagnosed with ESRD. 

Does Race Impact Mortality Rates in Patients with End-stage Renal Disease?

 “as an adjunctive (add-on) treatment for seizures” related to Lennox-Gastaut syndrome. With less than 200,000 people diagnosed with Lennox-Gastaut, the FDA classified Onfi as part of its 

, designed for “drugs and biologics which are defined as those intended for the safe and effective treatment, diagnosis or prevention of rare diseases/disorders that affect fewer than 200,000 people in the US”

“Lennox-Gastaut syndrome is a severe form of epilepsy that causes debilitating seizures,” 

, director of the Division of Neurology Products in the FDA’s Center for Drug Evaluation and Research. “This is a difficult condition to treat, and it will be helpful to have an additional treatment option.”

, Head of R&D at H. Lundbeck A/S said, “Onfi™ has in the largest clinical study ever conducted in LGS patients showed very solid clinical data which was further supported y several key secondary efficacy endpoints.”

Initially prescribed to treat anxiety and convulsions, Onfi was found to be effective in patients two years and older with Lennox-Gastaut through two multicenter controlled studies (CONTAIN Trial), which evaluated seizure control and seizure frequency. Common 

 felt by CONTAIN Trial participants included sleepiness, fever, drooling, aggressive behavior, lack of coordination, and constipation; many of which are similar to other anti-epileptic treatments.

, professor of neurology at Children’s National Medical Center in DC, and a principal investigator of the CONTAIN Trial, said, “Clobazam, now approved as ONFI, was show to be effective as adjunctive therapy for reducing seizures associated with LGS, and its upcoming availability provides hops for additional seizure management to patients and their physicians, caregivers and families.”

Last week, the FDA announced the approval of Onfi tablets (clobazam) as an adjunctive (add-on) treatment for seizures related to Lennox-Gastaut syndrome.

Clobazam Approved as Adjunctive Treatment for Lennox-Gastaut Syndrome

	HIV/AIDS was a big topic at the 49th Infectious Diseases Society of America Annual Meeting, as it is every year. In the Saturday morning session, “Improving HIV Care: Access, Reform, and the National AIDS Strategy,” the three speakers discussed the importance of developing a national strategy, the impact of the Affordable Care Act, and the financial sense and burden of caring for people with HIV. After each speaker gave his 20 minute presentation, there was a loud round of applause. Obviously all in attendance understand how important these topics are and understand the potential repercussions of the 2012 Presidential election.

Ronald Valdiserri, MD, MPH, Deputy Assistant Secretary for Health, Infectious Diseases, U.S. Department of Health and Human Services, focused his talk on the progress and challenges of the National HIV/AIDS Strategies. Dr. Valdiserri started off by saying that the National HIV/AIDS Strategies was what he was invited to talk about, not the Affordable Care Act, although clearly the two need to interface; Valdiserri received a big laugh.

HIV/AIDS Statistics: Diagnosis and Prevalence

		A couple of years ago, the CDC updated its estimate that there are 50,000 new HIV cases, even after being “relatively stable” the last couple of years.

		It is estimated that there are 1.2 million people living with HIV or AIDS, but approximately 20% of those infected are unaware that they are infected. This was something that Valdiserri kept emphasizing and reemphasizing during his discussion.

		Approximately 1/3 of all new, late diagnoses of HIV cases will develop AIDS within a year of diagnosis. Valdiserri commented, “This means that these people have been infected for years and have gone undiagnosed.”

		Between 40-50% of patients who know they are infected with HIV do not receive regular care by physicians.

		In 2008, there were more than 17,000 deaths attributed to HIV/AIDS.

 was launched. It is the first comprehensive attempt to develop a national strategy; this is not a federal strategy. Valdiserri said that the strategy is “meant to be a plan for all of us to get together to help.”

There are three goals that make up the strategy:

		Increase access to care and improve health outcomes for patients living with HIV

		Reduce HIV-related disparities and health inequalities (this is across the board)

Valdiserri included a fourth goal on his own which focuses on achieving more coordinated national response to HIV epidemic. Yes, there is a need to coordinate with the federal government, but not exclusively; there are a lot of areas to help improve coordination across all sectors of society, public and private.

During "Improving HIV Care: Access, Reform, and the National AIDS Strategy" session, the three speakers discussed the importance of developing a national strategy, the impact of the Affordable Care Act, and the financial sense and burden of caring for people with HIV.

IDSA 2011: Improving HIV Care

An IDSA Public Policy was released today titled, "Essential Components of Effective HIV Care: A briefing on a policy paper by the HIV Medicine Association and the Ryan White Medical Providers Coalition," authored by the HIV Medical Association and Ryan White Medical Providers Coalition, which describes the ideal HIV comprehensive care model and calls for innovative payment mechanisms and continued public health funding to support this care and expand it to those who need it.

Joel Gallant, MD, lead author, board member at HIVMA, associate director at Johns Hopkins AIDS Service, Mari Kitahata, MD, MPH, professor of medicine at the University of Washington, and Kevin Carmichael, MD, co-chair of the Ryan White Medical Providers Coalition, chief of service at El Rio Special Immunology Associates in Tucson, briefly discussed the policy paper and answered various questions about the impact of the Patient Protection and Affordable Care Act will have on the care provided to HIV patients, the need to have HIV measures considered for the next phase of the Medicare and Medicaid EHR Incentive Program, and whether the policy paper will be circulated to members of Congress with the hopes of having legislation developed on the problems Gallant, Kitahata, and Carmichael spoke about.

When asked about if having legislation developed by the federal government, Gallant responded saying, "There are a lot of unknowns in regards to health care reform and the next election."

In this video, Joel Gallant, MD, lead author, board member at HIVMA, associate director at Johns Hopkins AIDS Service, discusses issues related to a policy paper recently released by the HIV Medicine Association.

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