December 19, 2012
Specialty Pharmacies Unscripted
by Larry Kramer
The founder of ACT UP fights back after being told he couldn't use his pharmacy of choice.
On November 19, I received a curt letter from Empire BlueCross BlueShield, which has insured me since I worked as a trainee at Columbia Pictures in 1958 or so.
“Our records show that you are getting the medicines(s) listed below from a retail pharmacy. It is important to note that beginning 01/01/2013, your medicine must be filled through our specialty pharmacy, CuraScript … If you stay with your retail pharmacy, the medicine won't be covered.”
Enclosed was a list of most of my anti-HIV and hepatitis B drugs that I am taking. It is a complicated list. Over the years, I’ve had a lot of complicated illnesses. My pharmacist at Bigelow knows me and my list and my doctors well. I rushed over to show the letter to Bruce, who shook his head sadly. “It’s happening all over the place.” Bigelow is the oldest apothecary in America. I asked him, “But why are you being punished, instead of the greedy drug companies? Why am I being punished?” OK, we’ve been here before.
The fun starts when I finally get someone from CuraScript on the phone. I could not believe what she was telling me. In essence she was saying, “You people are abusing the privilege of being insured by us, stocking up on your drugs, whether you need them or not.” “How do you know that?” “Our research has showed us that.”
I asked, “Who exactly do you mean by ‘you people’?” By then she must have sensed this wasn’t going to be an easy one, and said, I guess sensibly, that unless I had some other way to pay for them “you might as well give me your info now so you don’t miss your next doses.”
Then began a quite ridiculous series of easily 40 phone calls, all recorded, all to just let Laurence Kramer or someone who can speak for him know that his paperwork is in the process of being completed. “There is absolutely nothing you have to do to respond to this call.” My nurse practitioner told me she’d phoned in all my “specialty” prescriptions along with the day for their delivery to match the end of the current supplies.
I got a call from a service representative to set up a delivery date. “Now, could you tell me how many pills you have left?” she asked. “You want me to count them all right now? Empty six bottles of pills?” “You have six full bottles of pills?” she said, as if she caught me out in her raptor vice. “But you should know by the last time your insurance paid for it.” This was a new one on her. There was a long silence while she tried to figure out how to handle this one. “You people,” I heard once again.
We settled on December 24 for delivery of “five prescriptions.” I know that more were phoned in, but she mangled the pronunciation of all of them so badly that I decided to see what I was sent. I did inquire if Dr. Fung’s request of not using a generic for Prograf [a drug used to lower the risk of organ rejection] had been honored and she said she had no idea.
So this is what I have to deal with for the rest of my life? I can’t bear thinking of all the trained Bigelow pharmacists being replaced by these brain-dead service representatives all over America.
Taking care of all my sick brothers and sisters, my people indeed.
I had been invited to a party given by [the former head of Empire] Mike Stocker. I wasn’t going to go. I just got out of really grueling surgery a few days ago. Mike Stocker and I have known each other since the early days of HIV when he ran Empire. I was the activist who gained entrance into his office and yelled at him nonstop about what they weren’t doing for us. He told me to sit down. We both learned a lot from each other and have become good friends.
I asked him if he knew that his company, that had once been so grand, was now so hateful. Is this what he wanted to be remembered for? He introduced me to Mark Wagar, Empire’s current president, retiring at the end of the year. They were not unfamiliar with what I was complaining about. CuraScript has not been without personnel problems.
I tried to shame each of them. “But is this what you want the company you ran for so many years to be remembered for? Screwing the pharmacists. Screwing the patients. Punishing us. Bigelow has provided me my meds for over 50 years.”
Why doesn’t anyone fight back? Why do I have to get my meds mail order from people who don’t understand the meds they’re talking about? Also, isn’t there a civil rights violation going on here?
On the way out Mike asked me, “Is what you are asking for no more CuraScript?” I said, “I want Bigelow back.” Leaving, I realized that the passion and fire were still in me. After the operation last week, I doubted I had any left. Spencer Cox’s death didn’t help.
I think all of us who want to choose and use our own dispensers should be free to choose them. You people, indeed.
Search: Larry Kramer, Empire BlueCross BlueShield, CuraScript, Bigelow
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comments 16 - 30 (of 49 total)
Frederick Wright, Coachella Valley, 2013-01-03 06:59:30
Welcome to the real world Mr. Karmer. I have experience many clinic counting my pills and been called in the administrators office for them to suggest and sign a piece of paper that I will take all pills or be dis enrolled in the clinic. I have recently been kick out of a clinic for questioning my medical treatment. You must be blessed to have insurance for many fight each day just to get a piece of treatment and pills. I am taking my pills every other day to save resources and my kidney.
Scott, Florida, 2013-01-02 22:29:25
I too have had this issue, very difficult to deal with, also if there is a disruption in delivery. IE 9/11 or a hurricane, what can I do. This is terrible for people with compliance issues. The insurance companies telling us who we can use to get the life saving meds we need. I am so upset I just have not started to fight yet.
Jimmy, Sleepy Hollow, 2013-01-02 22:25:28
"In which Larry Kramer uses hundreds of words to kvetch about health care, offering no insight, alternatives, or explanations for the president who brought us this travesty. Just more bitching."
---in which the intentions of a well meaning troll backfire, and we fail to have a much needed conversation about the sad state of HIV activism in the 21st century.
JamesP, New York, 2012-12-29 04:11:46
...In which Larry Kramer uses hundreds of words to kvetch about health care, offering no insight, alternatives, or explanations for the president who brought us this travesty. Just more bitching.
ladanak, groves, 2012-12-27 18:16:07
I have a wonderful independant pharmacy and am furious to think i wont be able to always use them,they are always there when i am in need
DAVID, PALM BAY, 2012-12-27 11:19:24
THE DRUG COMPANIES AND SOCIETY STILL WILL DISCRIMINATE AGAINST US, DONT FORGET, NEVER FORGET THOSE WHO WE HAVE LOST, THOSE ARE THE ONES WHO FOUGHT FOR EVERYTHING WE HAVE, THERE HAVE BEEN NO ONE TO TAKE THE PLACE, I ALSO HAVE THE SAME ISSUES AND I ALSO TAKE PAIN MEDS FOR MY CHRONIC PAIN AND I HAVE BEEN DISCRIMINATED AND TREATED LIKE IM JUST A DRUG ADDICT WHEN I GET MY MEDS FILLED.I HAVE BEEN POZ FOR 23 YEARS SO NOTHING FAZES ME ANYMORE.
Richard, Birmingham, AL, 2012-12-26 00:57:41
Dealing with that issue now. United Health Care is insisting that I change to their specialty pharmacy, Optumrx, which... I'd very much not like to do. But what can you do about it?
AB, Nashua NH, 2012-12-25 18:46:38
I just got a letter like this. I am on United Healthcare. This is so infuriating. I used to use BC/BS Express Scripts with quarterly refills, and had no issues with it, but my employer changed insurers and I've reverted to a local pharmacy instead. Now I'm getting this thing saying I have to use the insurance's "specialty pharmacy" AND I have to do it monthly. I don't even get the benefit of only dealing with the administration every 3 months. NOT HAPPY.
MarcusPE, Mansfield, Ohio, 2012-12-24 20:54:12
I have been having the same issue with this company now for the past sevral years, the only light at the end of the tunnel that I see is that if I actually do get on disa bilaty I will be going though cvs' mail order company wich actualy cares and does a good job of makeing sure that there customers are taken care of. CuraScript is a lousy company and I can hardly wait to get away from them.
Michelle Sherman, Dana Point, 2012-12-23 20:15:04
Thanks for this great post Larry. We need to mobilize everyone against Blue Cross, Blue Shield, Curascript & Express Scripts. The Community HIV Specialist pharmacist is critical in saving lives of people living with HIV.
HIV Clients need to mobilize and have their voices heard,and have a choice in their pharmacy care
Dan, Wisconsin, 2012-12-22 23:06:35
State of Wisconsin government & University employees are being "encouraged" to change to a mail-order specialty pharmacy to avoid tripling monthly copays--but with a new out-of-pocket maximum of up to $1,000/year regardless of whether you change pharmacies. This ONLY affects people on meds for HIV, Hep C, certain cancers, CF, MS...seems like an ADA violation, providing less coverage for certain conditions considered to be disabilities.
Andy, , 2012-12-22 01:45:54
All hats off to Mr. Kramer and his plight, it's something we've all dealt with, but instead of fighting the insurance companies, wouldn't it make sense to fight big pharma which marks this crap up 10,000% and gives the insurance companies motivation to try this? Right or wrong, as long as HIV is needlessly one of the most expensive diseases on Earth, we've all got targets on our backs.
MAT STRAZZULA, Boston, 2012-12-21 20:04:54
In BOSTON I am in a rest home. bluecross, blue shield. Required me to use EXPRESS SCRIPTS, their pharmacy. It was supposed two take two weeks it has taken over three months going on four, and still is a mess. I have had to pay for some of my non hiv meds, had to get overides, to get hiv meds, cause they kept messing up sending them. I spend hours every week trying to fix this. The nursing staff also spends time trying to fix this. They will not let me use their online service.
Rachel Chapple, New York, NY, 2012-12-21 15:20:34
CuraScript Specialty Pharmacy staff members are dedicated to the delivery of extraordinary care... CuraScript provides every patient with a Welcome Packet.
Sounds like you received your welcome packet!
I am so sorry Mr Kramer the provider's cost-saving choices caused so much stress to enter your life. It is very thoughtless and unkind of the CuraScript personnel.
I am also secretly happy that your magnificent "you people" fire in your belly is still raging.
Hugging you for all you do.
Tim Barrus, Hendersonville, 2012-12-21 12:56:08
comments 16 - 30 (of 49 total)
Mr. Kramer is up against the health care wall. I work with adolescent boys who have done sex work or are doing sex work who live with HIV. We get the YOU PEOPLE gig on a daily basis. Our little group is the cause of world collapse. I apologize for our existence. We were unaware the world had imploded. We have been busy just trying to survive. Larry Kramer articulates the health care struggles better than anyone.
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