Saturday, December 31, 2011

Save Money on your HIV medications in 2012

I remember when I was diagnosed, it was March 3rd 2010. I was working full time and had great benefits. I was rarely sick, and barely used my health insurance. My deductible I must meet before my medication is paid for at 100 percent is $1,800. When I was told I was HIV positive I chose to begin Anti-retroviral medications (ART) immediately. When I went to the pharmacy to fill my scripts I owed 1400.00 on this day, just to get my medication.  Living in NYC I had all I could do to save for my rent, eat, and occasionally have some fun with friends. My taxes were also due, and to anyone who lives on a shoestring budget in NYC every penny in your paycheck counts. So I always owed money at tax time, and that year I owed 600 dollars.
 I went home in tears from the pharmacy; knowing my VL was very high at the time and CD4 was low.  I wanted to begin suppressing this virus, but I couldn’t afford to. I did some research online and found co pay assistance programs which picked up a portion of the cost of my meds; I printed the coupons out and went back to the pharmacy that very same day. With copay assistance my medications came down to around 600 dollars for my Truvada/Isentress combo.  So, now the decision was to send in my money saved for my taxes or pay for my HIV medication.  To me the decision was simple.  I got my meds, and didn’t pay my taxes on time that year.
In the meantime my ADAP (AIDS Drug Assistance Program) application was pending approval.  Thankfully the next month, my ADAP application was approved and since then I have had no out of pocket expense for my HIV medication.  The one thing that always went through my mind with HIV is that I knew it was an expensive illness to treat, and how would I ever be able to afford the medications should I become positive.

The thought of not being able to pay for HIV medications should not be a deterrent in getting tested. Resources exist to make your medications free or at a reduced cost.  Please see some tips and resources below.  
Tip 1) if you are diagnosed with HIV and have private health insurance, you may ALSO qualify for your states ADAP program, as well as copay and patient assistance programs (PAPS) Simply Google your states health department and ADAP and you can look up eligibility requirements for ADAP.  Having private insurance and ADAP will give fill in the gaps. What your private insurance may not pick up, ADAP may and vice versa.  You can apply for ADAP on your own, but my suggestions would be finding an AIDS services organization (ASO) near you that can help you through the process.
Tip 2) if you have no health insurance you will likely qualify for your states ADAP program and other services, making your medication free! Find the nearest ASO (AIDS Services Organization) to start the paperwork process. Case managers will guide you through the process.  Some ADAP programs include other medications at no cost such as blood pressure meds, psychiatry medications (anti-anxiety/depression) meds, as well as other medications.  You can ask or find on the internet a list of what medications your states ADAP covers.
Right now across 10 states over 4,000 people are on ADAP waitlists. (see list).  So for those with no private insurance, and who would normally rely on their states ADAP program, funding does not exist in these states, and so therefore Patient Assistance Programs (PAPs) have been set up by the various pharmaceutical companies.
What are PAPs?
Patient Assistance Programs (PAPs) offer free HIV drugs to people with low-incomes who do not qualify for any other insurance or assistance programs, such as Medicaid or AIDS Drug Assistance Programs (ADAPs).
What are Co Pay programs?
These programs offer assistance to people with private health insurance for the co-payments required to obtain HIV drugs at the pharmacy. Some companies offer co-pay assistance for all of their drugs, including non-HIV drugs.
For further information on the above programs including eligibility criteria, pharmaceutical company names, and drugs covered I have included the direct link on AIDSmeds.com where you can find this information and save money on your medications.

The most commonly prescribed medications today are, Truvada, Isentress, and Atripla, Click on the drug name and it will take you to that drug co pay assistance program. For PAPs see the more detailed info in the AIDSmeds link above.

Again, thinking you cannot afford your medications should you become HIV positive and or infected with Hepatitis C should not be a deterrent to getting tested. As noted above, resources exist to help you pay for the medications which will keep you alive and healthy.
In 2012 I ask you add one more resolution to your list; getting tested for HIV and sexually transmitted Hepatitis C!
I wish you happiness and good health in the coming year.
Happy New Year!
Kevin Maloney
Dual Diagnosed March 3rd 2010, treated and cured hepatitis C; HIV undetectable and VL 480
“Rising Up, standing out, and speaking up about HIV/AIDS and Hepatitis C”

If newly diagnosed you may also be interested this blog entry I created:
10 tips for those who are newly diagnosed

Thursday, December 22, 2011

My holiday message and hope for the new year

Christmas Day 1982 was a happy day in my life.  I was 5 years old, and my favorite present on this day was my pound puppy, glo worm, and my new bike.  This was also the year I started kindergarten, and I still remember my kindergarten teacher Ms.Cambell and learning my ABC’s via the “Animal People”.
This was also the year I learned to swim, and my Dad taught me how to ride a bike without training wheels. I would play my Atari and Coleco Vision all day, I loved those games frogger and donky kong!  I had one of the hottest hot wheels around, and a huge collection of Garbage Pail Kids and match box cars.
I would play and watch TV all day. I couldn’t get enough of Tom and Jerry, Sesame St, and Mr Rogers.  When it was not my turn to watch TV I would watch MASH with my Father and General Hospital with my Mom. 
I looked forward to sleep overs at my cousins on the weekends, peanut butter and jelly sandwiches, MJ on MTV, Saturday morning bowling with my Mom and Dad, roller skating, riding my hot wheel, trading garbage pail kids and riding the merry go round at the park near my house, and  I remember nearly daily shopping trips to the mall with my Mother.
As a child growing up in the 80’s I was definitely the epitome of a Toy’s R Us Kid, and a total MJ and Nicolodian fan.  I was oblivious to what was happening in the big World around me. Aren’t we all at that age?  My Parent’s did a good job at shielding me from all the sorrow and negativity that was going on in the World. All the while, my parents, hoping my future would only know joy and happiness. 
As I was turning 5 and continued growing up in the 80’s; AIDS began to rear its ugly head and spread with vengeance.  By the beginning of July 1982 a total of 452 cases, from 23 states, had been reported to the CDC, and then the disease began spreading Worldwide. Much of the 80’s was spent figuring out this disease and how best to treat it and In the 90’s came the dreaded AZT treatments.

By January 1st 1995, a cumulative total of a million cases of AIDS had been reported to the World Health Organization Global Programme on AIDS. Eighteen million adults and 1.5 million children were estimated to have been infected with HIV since the beginning of the epidemic. Later in the month the CDC announced that in the US, AIDS had become the leading cause of death amongst all Americans aged 25 to 44.

30 years later the disease is still rearing its ugly head with approximately 56,000 Americans becoming infected with HIV each year. That equivilates to one person in the United States becoming newly infected with HIV every 9 1/2 minutes. Through 2007, more than 576,000 people with AIDS in the US have died since the epidemic began

Globally, since the first cases of AIDS were reported in 1981, infection of HIV has grown to pandemic proportions, resulting in an estimated 65 million infections and 25 million deaths. During 2005 alone, an estimated 2.8 million persons died from AIDS, 4.1 million were newly infected with HIV, and 38.6 million were living with HIV.

Researchers throughout the World but particularly right here in the United States are working tirelessly to finally eradicate this illness.  Never have we been as close to a cure as we are now.
With the advent of new drugs scientists have been able to suppress new infections to a point where the disease becomes undetectable.  And Scientists have been able to identify reservoirs in our bodies where latent HIV hides and where current medicine cannot get at. In an e mail communication with Dr David Margolis; within the next few years studies will be rolling out in Chapel Hill, NC targeting these reservoirs. This is another step towards the cure.
We learned In 2011 that HIV + individuals on anti-retroviral therapy are 97 percent less likely to pass HIV to a partner, and just in the past couple days the FDA has approved an HIV Vaccine to be used in clinical trials. We are getting close!
Until we get to that cure; those of us infected or affected by HIV/AIDS across the World must keep fighting, not just for our livelihood, but for upcoming generations.  Keep advocating, keep educating yourself and the public, volunteer, have safe sex, keep on top of your health, and donate if you can to a couple of my favorite organizations AMFAR or the ADAP Advocacy Association.
In closing, I have two wishes this Christmas and New Year. My first wish is that my Mother gets off the respirator soon, and that she returns to better health, and get's the lung transplant she so desperately needs. She has hung in there for so long, I love you so much and I am glad that you have made it to another Christmas, keep fighting mom!! 
My other wish is that we will continue to get closer to finding a cure for HIV/AIDS and that these acronyms will soon be written into history.
Today; to those survivors who have lived with the illness longer than I, and particularly to those who have lived with the virus 20 + years; I applaud and look up to you. Your advocacy and courage in the early years of this epidemic are the reason I am alive today to tell my story, to reach out to others, as you have done, and to spread the message of the importance of knowing ones HIV AND Hepatitis C status.

Sometimes I wish, just for a day, that I was 5 again.
Happy holidays and may everyone in this World only know peace, happiness, prosperity and good health in the coming year.

Kevin Maloney
"Voice in unity strengthening community"
twitter: http://www.twitter.com/riseuptohiv
facebook: http://www.facebook.com/riseuptohiv
e mail: kevin@riseuptohiv.org



WE MUST KEEP THE HOPE ALIVE THAT ONE DAY WE WILL LIVE IN A WORLD FREE OF HIV/AIDS

Friday, December 2, 2011

Hershey hate; demand the Hershey's Company intervene to reverse decision on HIV + student and dismiss school officials



How sad that this story continues and the school has not yet reversed course.  Each night for the past three nights CNN’s Anderson Cooper AC360 news show has made this a top story and has been giving it a lot of attention, thank you Anderson. To view a clip of the story that appeared on AC360, click here
However, this story has fallen out of news media and the public spotlight; we need to press on with story. We must not allow this school and the Hershey's Company to remain silent on this issue.  The student and the World deserve a dignified and actionable response.  Below is my take on this incident and information that has been in the news.  
The communications director of the school has made numerous on air appearances continuing to support statements coming from the school. Does Connie McNamara, Vice President of Communications at Milton Hershey School really stand behind these statements each night, does she really believe in the words in these statements, and is she THAT uneducated about HIV/AIDS?!? Or, is she trying to keep a job? If I were her I would do the right thing and resign my position immediately.  I feel this fear goes deeper into the administration at Milton Hershey and those NOT in support of this decision have a moral duty to walk away,  bring down the veil and reveal who the real fear mongers are at this school.  It is time for Milton Hershey Trust Company to intervene in this matter!
I cannot believe the ignorance surrounding this story, and why the parents of these children of the school are not in support of this boy?!? Have we really fallen back 20 + years on AIDS education and awareness? I am mad and saddened. If I had the organizing power I would organize busloads of protestors to descend on the school and we would hold out for days, or weeks. If not to force the school to accept this student, but to stand in solidarity with this student as reminder that HIV/AIDS is still around 30 years later, and that this kind of discrimination today, especially in America cannot be tolerated.
I am further outraged that a school founded by the Hershey Co.  In 1909 and financed by the Milton Hershey School Trust, which also holds the controlling interest in The Hershey Co. has yet to issue a statement or intervene in this matter. Below is part of the mission statement for the Hershey Co…..
"At The Hershey Company, we make the chocolate brands that people love. Hershey’s Mission Statement, Bringing sweet moments of Hershey happiness to the world every day, summarizes our company, our people, our past and our future. Our history of producing the world’s best treats goes back more than 100 years. We take great pride in our brands and in the fun and enjoyment our products add to the lives of our consumers.
Hershey has a distinguished record of supporting the well-being of children through our relationship with Milton Hershey School. The School was established by the company’s founder in 1909 and provides a nurturing environment, quality education, housing, and medical care at no cost to children in social and financial need. The School is administered by the Hershey Trust Company, Hershey’s largest shareholder, making the students of Milton Hershey School direct beneficiaries of Hershey’s success."
By denying access to this child to the Milton Hershey School, Hershey Co. has gone back 100 years  on its strong values, and distinguished record of supporting the well-being of children. Milton Hershey School and Hershey Co. have put the well-being of this child at risk, and the school and Hershey Co. should be held liable to the highest extent of the law. No longer will I think of Hershey as bringing sweet moments and happiness to the world every day. When I see a Hershey product it will bring me disgust and sadness. I will forever connect the Hershey Co Brand with this horrific display of ignorance.
I have started a petition on signon.org asking people to sign and leave a comment, regarding boycotting the Hershey brand and supporting a statement directly from the Hershey Company.  Again, if I had the organizing power I would position protestors outside grocery stores throughout the country, asking shoppers to boycott Hershey products; especially during this holiday season.
I can only hope the community of Hershey, PA, surrounding communities, the students and the parents of the school take a stand, by rising up to HIV, dismantle the ignorance that lies deep within this schools administration. As a PLWH and in solidarity with those around the World; we must and will continue to educate the public on the very minimal risks of contracting HIV/AIDS. I would immediately call on and ask the Hershey Trust Company to intervene and issue a statement on this matter.
In the interim I have compiled a list below of all Hershey products you may consider boycotting, and remember to sign the petition!
With sadness in my heart and with hope for a positive outcome, 
Kevin Maloney


If you would like to write a letter, send an e mail, and/or call the school and the Hershey Company a list of contact information is below.
Milton Hershey School:
PH: (717) 520-2000       |
E-mail: mhs-communications@mhs-pa.org
Admissions 1-800-322-3248
Fax: (717) 520-2117
Hershey Company
(A phone number is listed, and you can fill out an online form choosing which state in the US or where in Canada you are)


 SIGN THE PETITION



Products to boycott:


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