Thursday, February 16, 2012

Syringe Exchange programs saves lives and reduces the spread of HIV and Viral Hepatitis. Tell Congress....

Written for the ADAP Advocacy Association

GO RIGHT TO THE PETITION sponsored by the Harm Reduction Coalition or read more detailed info on Syringe Exchange Programs below, then sign!

Just this week when the President presented his budget for Fiscal Year (FY) 2013 the President included a provision in the budget that if enacted into law would allow local communities the power to use federal funds for the purpose of syringe exchange programs (SEPs).

In FY 2010 congress lifted a ban on funds for SEPs in favor of the local control provision mentioned above. Then in FY 2012 Congress flip flopped and re-implemented a Federal ban on the use of federal funds for SEPs. This week is a step in the right direction and we must tell congress to again repeal the ban. SIGN THE PETITION to tell them to do so!

What's the issue: SYRINGE ACCESS

• One third of people with HIV in the United States were infected through injection drug use.
• Every year, another 8,000 people are newly infected with HIV through sharing contaminated syringes.
• Every year, another 15,000 are newly infected with hepatitis C through sharing syringes and contaminated injection equipment.
• African Americans account for over 50% of all AIDS cases attributed to injection drug use, while Latinos account for nearly 25%.
• Among women, an estimated 61 percent of AIDS cases are due to injection drug use or the result of sexual contact with someone who contracted HIV through injection drug use.
• Younger injection drug users generally become infected with hepatitis C within two years

These infections are preventable

Syringe exchange programs provide tools, resources, and education to enable people who inject drugs to protect themselves and their communities through safer injection practices and harm reduction methods. Nearly 200 syringe exchange programs currently operate in 38 states, Puerto Rico, Washington DC, and Indian Lands. Both state and local jurisdictions authorize and regulate sterile syringe access programs. There are no federal regulations governing sterile syringe access.

Syringe exchange programs are also highly cost-effective. The lifetime cost of medical care for each new HIV infection is $385,200; the equivalent amount of money spent on syringe exchange programs would prevent at least 30 new HIV infections. In addition to the reduced risks for disease, sterile syringe access programs facilitate greater access to drug treatment. These programs provide a crucial entry point into medical care, detox and rehabilitation, and mental health treatment.

Current political systems and the medical community have failed to adequately respond to the public health crisis of HIV/AIDS in the injection drug user (IDU) population, an estimated 350,000 users in the U.S.

While some fear that such programs will increase drug use or contribute to general lawlessness, the overwhelming body of research indicates that the presence of SEPs does not result in increased drug use or crime. On the contrary, SEPs increase the availability of drug treatment for both injection and non-injection drug users, and have been shown to decrease the rate of drug use. The current state of federal law must now evolve to reflect the benefits of SEPs, and support communities in implementing SEPs how and where necessary to meet their specific needs.

The petition reads as follows:

To Speaker Boehner and Chairman Rogers,

We are petitioning to express our concerns regarding the shortsighted decision to block use of federal funding for syringe exchange programs in FY 2012 Appropriations. This policy reversal poses an immediate threat to the health and safety of American families, and will cost the nation’s taxpayers money in medical expenses to treat preventable infections for years to come.

At a time when our country faces an unprecedented epidemic of prescription drug abuse – including reports of hepatitis C outbreaks due to painkillers injected with unsterile syringes – we must keep all options on the table to protect our communities’ youth. As the Surgeon General determined in 2011, syringe exchange programs promote entry and retention in drug treatment, and these programs are effective in reducing not only HIV infections and transmission of other viruses, but also in reducing drug abuse itself.

Under previous federal policy, decisions on use of federal funds for syringe exchange were left in the hands of those who know best – local communities, in consultation with law enforcement and public health officials. This flexibility ensured that any use of federal funds remained consistent with local needs, priorities, and values.

We urge you to reverse this misguided funding restriction in FY 2013, and restore decision-making on syringe exchange to its rightful place: the wisdom of communities that are struggling to protect their own.


SIGN THE PETITION


Kevin Maloney
RiseUpToHIV
Twitter http://www.twitter.com/riseuptohiv
FB http://www.facebook.com/riseuptohiv

Sunday, February 12, 2012

Memoirs of a Valentine; for those who love and have loved....

Having recently moved I am now unpacking and you know that one box we all have with pictures, notes..etc from our ex's? Every couple years or so you'll open that box, because you remember how happy you were at that moment in time, and you need to read the notes to re-assure yourself you are still that same person, that you are still loveable and deserve love again.
Now, if it was a bad break-up, any and all notes were destroyed, ripped up or burned. The memories faded and forgotton. Though, I think we all have that one person we'd like to know about today, how are they, what path in life did they choose, are they married, single, with kids or not? How may life have been if you stayed together, re-kindled your realationship? Maybe the break up was for the best? Maybe you just didn't know at the time.
The notes can be a reminder of your maturity or immaturity at that point in your life. The notes that were so reflective then, may be relevant to your situation today.
Today I opened 'that box' and found a series of cards and notes and a valentine card from 2003 and every one I read I choked up, everyone I read could be something written for me today. Honestly since being infected with HIV and HCV these notes have as much value now, than they did then.
In the spirit of love and valentines day I share with you these notes and encourage you to look up that one love you still think about, open that box this valentines day. Billy - you will ALWAYS occupy a space in my heart.

Valentines Day 2003
 "Kevin, You still make me feel like i felt when we met . I look at you and still see the same person I have fallen in love with. I think of you and still feel like I could do anyhthing..and when we are together, I still want to feel you close to me, to hold your hand, to make you smile. I know I will always feel this way, always be in love with you, and always want you for my valentine. I love you, Billy"
April 5th, 2004
"Kevin, the generous, loving things you do and say are so much a part of you that sometimesI neglect to point out how much i appreciate each and every one. But I do. You'd probably be amazed to realize all the things i notice....like the caring energy you put into keeping all of our everyday things running smoothly, the patient way you take things in stride when something comes up, and the upbeat way you approach whatever it is that each day brings us...and you still find the time to let me know how much I am loved. You do all of these things so naturally that i've come to count on them. I am one lucky guy, and I wont let me forget it. Today I want you to see it spelled out and make sure you know it, too.  Happy Anniversary, love Billy"
June 12th, 2003
"Kevin, I'm so happy for you and for all the things you have accomplished to get here (fort lauderdale) and especially for being able to be a part of it...good luck to you and all your future endeavors, with love, Billy" 
Sept 12th, 2003 (my birthday)
"I believe in the things that are important to you and in the way you choose to live your life...I believe that you can accomplish anything you set out to do because you have many talents and the wisdom to use them all well. I believe that you have what it takes to overcome obstacles, and to grow from every experience life brings your way. I belive in your courage, your compassion, your integrity, and your strength. I belive in your goodness and in your love for me. I belive in you...just because, with lots of love"
Nov 2003
Congratulations on your new life and on all of your accomplishments....go confidently into the direction of your dreams! Live the life you always imagined...<thomas thoreau>
Sept 12, 2004 (my birthday)
"Kevin, I am so happy to be a large part of your 26th year and anxious to help male your 27th extra special, with lots of love, Billy"
You may also read my rememberences of my ex Billy and see pictures of us here in a previous blog entry I wrote 
Happy Valentines to everyone in the WORLD today; may you only know happiness, love, and peace in the year ahead.

By: Kevin Maloney

Saturday, February 11, 2012

Facts or Follies, the government is developing a data collection process to acess the viability of ADAPs; and you can weigh in

As of February 2nd, 2012 there were 4,575 people across twelve (12) states on AIDS Drug Assistance Programs (ADAPs) wait lists; they are waiting to receive their live-saving medication they need to remain active, healthy, and productive members of their communities. In the meantime the U.S. Department of Health and Human Services' (HHS) Health Resources & Services Administration (HRSA) will be working on a data collection process with the main goal of improving access to all 56 ADAPs.

HRSA will soon be gathering data to access the viability of the ADAPs. These programs provide assistance to help low income, uninsured and underinsured people living with HIV/AIDS (PLWHA) access to life saving medications.
The study will seek to find answers to the rising enrollment in state ADAPs and states’ ability to meet these demands for ADAP services, or rather, lack thereof. Eight respondents from eight states (TBD) will weigh in on ADAPs. The individuals to be interviewed will fall into three general categories:

• ADAP personnel (staff at local and state health departments);

• State HIV/AIDS program leads (State AIDS directors); and

• Personnel from state and local programs such as Medicaid, and pharmacy assistance programs. (staff at local and state health departments)

It will take HRSA an estimated two-and-a-half months to complete their information gathering. They will be assessing factors that are contributing to the rise in ADAP services, i.e. earlier use of Anti Retro Viral Therapies (ARVs), lower attrition of existing clients, unemployment and loss of insurance, and increases in drug costs.

The study will also aim to examine factors that may decrease ADAP costs, such as health care reform, and other cost containment strategies. Study findings will be used to develop policy and recommend enhanced practices for managing state ADAPs.

HRSA is accepting public comments on their data collection process described above and these comments can be emailed to paperwork@hrsa.gov.

What is disturbing here is that no specific time, or focus appears to be devoted speaking with HIV-positive individuals who are or are not ADAP clients, advocates working at the local, state and federal level, nor any health care providers. To get the optimum picture of ADAP’s efficacy and ways to improve it, wouldn’t these stakeholders’ opinions be valuable? Shouldn't patient input be a focal point of the data collection?

This is of particular concern given recent reports only about fifty percent (50%) of the U.S. HIV-positive population appears to be in care and treatment. Given the newest data indicating that being on ARV treatment appears to be the single most effective method of preventing HIV infection, some assessment with this focus appears to be a top priority.

Also, which eight states are going to be chosen, and which people from these eight states will be interviewed? As is known each state ADAP is not the same, so a good sampling of states with various ADAP models must be represented in the data collection process.

Which criteria will be evaluated? Decreased funding in the areas of prevention, needle exchange programs, and case management should be top priority when accessing the increased usage of ADAP. As well, the economic downturn should be taken into consideration, loss of employment, and insurance of people living with HIV/AIDS (PLWHA).

Those working in HIV/AIDS at local, state, and federal levels know the reasons behind the problems that many state ADAP programs are having; they have the best ideas on how to fix the issues, and how to unify state ADAPs to make them more user friendly, and cost effective. Over many months now, even years, these issues, and ideas have been documented in letters and reports that have been sent to HRSA to best address these issues. Apparently, these reports have fallen on deaf ears.

The resources and time HRSA will spend conducting this research will be administratively costly, and may produce a very narrow approach to a program that needs to be looked at from a much broader prospective. Is this data collection process necessary? It will likely reveal what community, state, federal, and other industry leaders already know. It will be process that will take a better part of a year to implement, conduct, and report on.

Time is of the essence with 4, 575 people across 12 states on an ADAP waitlists, hoping to receive the medication they need to remain alive, healthy, and productive. This number is on the uptick and will continue to rise as cash strapped states are implementing their own broad state level cost containment strategies, while at the same time patient assistance and co-pay assistance programs are becoming overwhelmed. States cannot afford to wait and hope that health care reform will relieve these immediate problems.

HIV/AIDS stakeholders should demand that this data collection process helps to ensure that everyone living with HIV/AIDS has unfettered access to the care, treatment and resources so desperately needed.

By: Kevin Maloney

Written for the ADAP ADVOCACY ASSOCIATION; permission is granted to repost.

Friday, February 3, 2012

The ADAP re-certification process; the frustration mounts! Important make sure all your contact info is up to date!

The U.S. Department of Health & Human Services' Health Resources & Services Administration (HRSA) - which overseas HIV/AIDS supports and services in the United States - nearly a year ago put into place a rule that all 56 AIDS Drug Assistance Programs (ADAPs) must re-certify its clients every six months. While very few states have complied from the beginning, it’s not until most recently that letters have begun going out like rapid fire to ADAP enrollees in MANY states.

Horror stories are popping up all over as people living with HIV/AIDS (PLWHAs) are finding out the process to recertify is time consuming, frustrating, and not very ‘user friendly’. Individuals have talked about it taking hours at a time to complete the process. For those who fail to re-certify on-time they are being dropped from the program. This re-certification process is causing yet another barrier to access to care that should be a seamless process for PLWHA.

There is NO uniformity across ADAPs to this process. Individuals have been required to gather financial and health information, be denied for other programs first (Medicare/Medicaid) and provide the denial letters. Also no time frame exists as to when one must recertify. Is it 10 days, a month, or 6 weeks? Some states are sending out first notices, will there be a second and third notice? Will there be a follow up phone call too? What if recertification notices arrive while a patient is in the hospital for a lengthy stay? What if someone hasn’t updated their address and/or phone number in a long time and is incommunicado?

The frustration level over this process is really beginning to mount and will only become more frustrating to advocates, health professionals, case managers, and more importantly PLWHA as more re-certification notices start going out.

Yes, ultimately the responsibility lies on the client to remember their re-certification date, update their address, take time out of their busy schedules, gather documents, and be sure to cross the T’s and dot the I’s! Oh, and guess what? It’s time to recertify again!

As mentioned above, if patients fail to re-certify, then they will be dropped, which may mean now going onto a waitlist, and/or having a lapse in coverage with no access to medication. Those receiving ADAP should be sure that their contact information is up-to-date with their respective state health department, local health department and case managers.

Wouldn’t it be better if this process occurred every one or two years instead? Had uniformity, and was more user-friendly? Weigh in below on what is happening with regard to re-certification in your state, and with any comments or thoughts on this issue.

Kevin Maloney
Written for the ADAP Advocacy Association Blog

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