December 19, 2012

Specialty Pharmacies Unscripted

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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Previous Comments:

Gio, Atlanta, 2012-12-20 20:28:47
I just went through the same thing from Optimtrx. I was told that they can get the meds cheaper. I noticed by accident the full price of my med and it is definitely not cheaper they are charging my insurance company $800.00 more then what Walgreens was charging.. so the cost rational does not fly. I would so love to go back to my pharmacy they have always been helpfull what can we do to reverse this stupid trend..

Daniel Robison, West Hollywood, 2012-12-20 19:53:23
Firstly, I can't believe that this is happening to Larry Kramer but that does give me hope as I know he will fight for himself and subsequently the rest of us. In LA County we are currently dealing with a new Pharmacy service and that is coming with its own complications but as a Treatment Advocate I am pretty sure it is illegal for an Insurance Co to require you to use a specific Pharmacy. They may be able to charge you a little more by going out of Network but they cannot deny you coverage.

David, Phoenix, 2012-12-20 19:21:17
I am currently going through this right now. I am newly diagnosed and my meds go a pharmacy that specializes on hiv meds. A few weeks after i last filled my scrips i received a letter from a specialty pharmacy through my insurance united healthcare telling me that i need to start ordering from them or i wont be covered any more...they told me its the same amount for co-pay and i asked why i had to switch and they replied because i have special kinds of meds....please someone out there help me.

Tony Cruz, New York, 2012-12-20 18:55:54
I better start READING my friggin mail because I have BC but of Mass, & ADAP .I was a Pharmacist(has NO extra benefits) and never have I seen this happen.On renewals ,I tell them what I need ,don't need 1000 Imodium but one bottle holds me ..please tel us what happens Larry, we are here for you and us! .I use Vil Apothecary & over 30 years POZ, hit 60yo yesterday, never thought I would make it but I am here because of people like Larry Kramer & friends. Happy Holidays to Larry & POZ. Tony Cruz

Kevin, Independence, MO, 2012-12-20 17:00:47
I fully understand that feeling. My current Medicare part D company is HeathNet, and beginning in January, they've moved me to SilverScript (or they became SilverScript, not clear). And looking at their list of pharmacy providers, my current pharmacy was not listed. I've been with this pharmacy since 1988, despite the fact they've changed hands about 4 times and are now owned by Walgreens. So I took my new ID card into the pharmacy and luckily, they ARE in the list of providers. Luckily.

Carl, Chicago, 2012-12-20 16:20:01
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.

Dave Karl, Pahoa, Hawaii, 2012-12-20 15:25:09
I'm in te same fix as Larry. My HIV meds have been transfered to CuraScrips. Not only will they NOT accepted my ADAP co-pays, They want me to pay $500+ per month for copays for my 2 HIF Rx. After being on disability for 20 years....$500 extra per month does not fit anyway you figuere it into my budget. It appears that CuraScrips wants those of us who don't have money for c0-pays to DIE. HELP!!!

John C, Forest Hills, NY, 2012-12-20 14:25:36
In response to Larry Kramer's article, I agree 100% with you. We need to band together and file a class action lawsuit against these insurance companies to stop this abuse. Please keep us posted if you find out more info. Thanks, JC

Rick McMahan, Cantwell, Alaska, 2012-12-20 13:45:35
I feel for you Larry and hear you loud and clear. I too have had the exact same problems with my insurance company, Untied Health Care and their specialty Pharmacy OptumRx.The sad truth is I have missed a total of 7 days or 14 doses of my meds over the past two years because of the "personnel" problems associated with these huge, nonpersonal industries. I was forced to use OptumRx as my pharmacy 4 years ago and have yet to speak with the same costomer service representative twice.

Robert, Fort Lauderdale, 2012-12-20 12:26:20
Good for you Larry for fighting back once again. It's good to see you still have it in you. I can't tell you how many times I've missed doses or been billed thousands of dollars because of the incompetence of the staff of these "specialty" pharmacies. Some insurance companies "allow" you to appeal having to use them but the paperwork, time and frustration is so grueling that most, including many physicians' offices, will not even bother. Ironically there is little savings to the insurance co.

DOUG WILIIAMS, Lobg Beach, 2012-12-20 12:26:00
I just went through the same thing and my pharmacy is filing an exemption request to keep me with them as they know who i am what I need and do an excellent job! Curascript can suck it!

JL, Milwaukee, 2012-12-20 11:15:50
I agree 100 percent. But where do we start?

Todd, Brooklyn, NY, 2012-12-20 10:21:28
Great article - and well written. I went through the same thing. I thought at one point the NY legislature was going to do something to stop the practice but I don't think it ever went anywhere

MrBill, , 2012-12-20 09:26:47
I just received the same type of notification from United Health Care, removing my "specialty med" from a small caring pharmacy I've used for years.I must use the United owned QuantumRX. I've had bad luck with mail order before and have no desire to return to it and have delivery issues. 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 insurance company owned pharmacy!

MaryLou, Morrisville Pa, 2012-12-20 09:21:24
our insurer also 'suggests' that we use the accepted mail order.. they will pay for 3 refills at a local pharmacy and if we continue to use that local they NO LONGER COVER THE DRUG.. we can use it (the local) they just won't pay for it !!!