Mad About Mail Orders
In the article “Specialty Pharmacies Unscripted” (December 19, 2012) Larry Kramer sounded off on insurance companies that require individuals to purchase their HIV medication through mail order pharmacies rather than giving them the option of using local pharmacies.
We need to mobilize everyone against Blue Cross, Blue Shield, CuraScript and Express Scripts. The community HIV specialist pharmacist is critical in saving lives of people living with HIV. HIV clients need to have their voices heard and have a choice in their pharmacy care.
I started having this problem earlier this year. I'd been going to BioScrip (now Walgreens) for Atripla, but now I have no other choice but to use mail order. It's not fair to not have any options, and it's really inconvenient because it's a lot easier for me to go to the pharmacy near me than to get something mailed.
MC, New York City
I'm facing a similar issue here as I change insurance companies. How do we fight this? Is there already a group working on this issue, or do we need to form one now? Access to meds is literally a life and death issue—the importance of which cannot be overstated.
I have had the exact same problems with my insurance company, UnitedHealthcare and its specialty pharmacy OptumRx. The sad truth is I have missed a total of seven days or 14 doses of my meds over the past two years because of the “personnel” problems associated with these huge, non-personal industries. I was forced to use OptumRx as my pharmacy four years ago and have yet to speak with the same customer service representative twice.
I just went through the same thing, and my pharmacy is filing an exemption request to keep me with them. They know who I am and what I need, and they do an excellent job! CuraScript can suck it!
Long Beach, CA
I received the same type of notification from UnitedHealthcare, removing my “specialty med” from a small caring pharmacy I've used for years. I must use the United-owned Quantum Rx. I've had bad luck with mail order before and have no desire to return to it. I've written an appeal letter but am not anticipating a positive response. I am willing to use an “in network” pharmacy. It should be illegal to force us to use a mail-order pharmacy owned by the insurance company!
Our insurer also “suggests” that we use the accepted mail order pharmacy. They will pay for three refills at a local pharmacy, and if we continue to use the store they will no longer cover the drug. We can use the local pharmacy—the insurance company just won't pay for it!
MaryLou, Morrisville, PA
Editor's Note: To find out how you can take action and fight to protect your access to safe and affordable medicine, visit fight4rx.org.
Drinking and Dosing
The article “Mixed Messages on Meds and Booze” (December 3, 2012) examined the dangerous practice of skipping doses because of the false belief that alcohol and antiretroviral medication are a toxic mix.
None of us should be getting so blotto that we “forget” anything! I've taken my meds and had my bevvies too and am still here after 30 years. Moderation is always key. Glad somebody has put this in writing, because frankly I'm tired of getting dirty looks from my friends because I've got a lovely blue pill in one hand and a gimlet in the other!
I've skipped [meds while] drinking because I [thought] it would be toxic. No one told me otherwise. Thanks for posting this article! Get the word out to caregivers.
Craig, Portland, OR
When I first tested positive in 2004 my drinking became even more uncontrollable than before. I never stopped taking my meds and never had any adverse side effects. I have remained undetectable, and my CD4 count fluctuates between 630 and 850. I just passed 28 months sober, and my numbers remain the same!
Michael Jones, Pensacola
I have been positive since 1985 and worked in an HIV clinic conducting research and primary care. I was told that the biggest reason for not taking meds when drinking was the diarrhea from mixing the two. I took mine and just dealt with the diarrhea. Not pleasant.
Dealing With Death
Forum member Aztecan created a thread titled “Death” (November 24, 2012) in the Living With HIV forums where he shared the loss of someone to AIDS because the person didn't want to take his meds. To read this thread and others, visit forums.poz.com.
I have had people come into my life who for whatever reason can't or won't accept their diagnosis. As time goes on, you see them stuck in the same place, in denial or just not caring anymore what happens to themselves. It's heartbreaking because you know that the disease will eat away at their spirit and that eventually the body will follow.
Sorry you had to needlessly witness this yet again. I'm not sure what's worse: watching those who died early on who wanted to live and didn't have the ability, or those who have the ability and choose not to.
It is truly sad that he chose this option, especially considering he didn't have any major issues with the meds or from the virus. But mental health issues cause people to do things they wouldn't normally do, and mental health often goes unchecked. So I think it is probably safe to say he didn't “choose” this in his right mind.
Mad About Mail Orders