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Mail Order Meds Suck

| 58 Comments
As the Twitter hashtag #firstworldproblems underscores, many of the problems we face as people who live in developed countries often seem trivial when compared to those faced by people in developing countries.

That said, our problems are often not so trivial. On the one hand, I'm grateful for having health care insurance that pays for my HIV meds. On the other hand, I'm angry that my insurer forces me to use a specialty mail order pharmacy to provide those HIV meds.

Larry Kramer recently noted his bad experiences with this trend, which is growing in the wrong direction. My opinion is supported by a lawsuit against Blue Cross of California (d.b.a. Anthem Blue Cross) by the advocacy group Consumer Watchdog for just this very thing.

I used to go to a retail pharmacy and be done with it. Now, I have to call every month and be subjected to the most annoying of routines ("that's a tablet to be taken orally" they say and I think "I know, I've taken meds before!"), which wastes 30 minutes that I'll never get back.

Yes, boo-hoo #firstworldproblems and all that. The idiocy of the process is hella horrible, but that's not really the issue (although, as I said, it's hella horrible).

Insurers say it saves them money, but advocates say the savings are at best minimal and at worst a penny wise and a pound foolish. Any tiny savings realized now may be dwarfed by the costs later when patients who are forced to receive their meds this way are harmed in the process. Yes, harmed.

Mix ups in prescriptions, lack of knowledge by service representatives and delays in receiving shipments are just some of the problems with mail order pharmacies that jeopardize health. None of us living with HIV should be subjected to such problems unnecessarily.

The straw that broke my back on this topic happened last week. I was down to a two day supply of meds. I admit that I should've called to refill a day or two earlier, but you know what, I'm human (and you know what, if I could just go to a retail pharmacy, it wouldn't matter).

So, I call. Rush delivery, great. Three days pass, no delivery. I call again Friday night. "It was canceled." WTF? "Rep from wrong department wasn't authorized, so we canceled order." And you were going to tell me when? "Yeah, you should've been called." Yeah.

So, can I get a rush delivery? "No, too late for that." Oh, I see. So fuck me then. When can I get a delivery? "Tuesday." Tuesday? That means being without my meds for at least five days! "Sorry." Yeah.

I spoke to a supervisor to file a formal complaint, although I expect nothing to come from that. I hope that lawsuit in California begins to turn the tide in our favor.


Oriol on:

58 Comments

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Comments on Oriol R. Gutierrez Jr.'s blog entry "Mail Order Meds Suck"

I have had some recent HORRIBLE experiences with Optum. They should call when I am due to order, but don't...then they wouldn't cover something they have always covered, and suggested I get a different medication. Then they said they could get it to me in 10 days. In addition the screwed up my billing and wanted me to figure it out. I called my insurance Co, and told them to work it out, and that I never wanted anything to do with Optum again. They gave me permission to use my local pharmacy.

I get mine thru OptumRx as well. It's ridiculous - saving money how? You have to hire reps, some reps are surly, lease an office space, etc which equals to tons of overhead and equals extra costs - how is this saving money? I hate calling, I hate the wasting of time, I hate having the scripted "how to take your meds" routine over and over again. I get the feeling this is all for monitoring/statistics reasons, its the insurance company collecting data on patients and pooling us all in the "costing us to much money" pool.

I use the mail order pharmacy at the University of Wisconsin's pharmacy in Madison. They tend to send me meds too soon!

I absolutely hope the lawsuits multiply -- and eventually fix this problem.

I'm going to reach out to my local pharmacy -- which is housed within the HIV medical home where all my other services are -- and see if we can initiate a lawsuit in our state, too. They have a legal services department as well -- so it feels like it might be the perfect place to initiate another action.

In the end, I don't really care if this makes things easier or even cheaper for the insurance companies. Making things easier for the insurance companies isn't what good HEALTH CARE should be about. This continues to be a major inconvenience for me -- and, after playing the game for over 5 years, I'm tired of it.

ACT UP!

I have also had nightmare experiences with Curascript mail order pharm, which BCBS of Georgia forces me to use. Every month is some ridiculous issue which delays my delivery. I HATE using mail order and Curascript/ExpressScript has to be the worst company I have ever had to deal with in my entire 53 years.

My experience has been very favourable. Get 90 days at a time, they send me email reminders to ensure that I am still on same medication. Recommended I have a 30 day supply when I first signed on, so I always have about a 30 day supply when I reorder. Discussed emergency situation, IE, dropped meds in toilet while on trip...they indicated no problem, could get one emergency order through local pharmacy... I miss my personal touch with local pharmacist...but haven't experienced above hiccups...

I personally don't feel comfortable with the service . When a delivery service will leave 3,000 dollars worth of prescription drugs at your door with no signature ! That's a red flag in my book.

Oriol, thanks for sharing your experience and continuing to publicize this change as did Larry Kramer.

Our employee plan still allows us to choose mail order or local retail for antiretrovirals. We use Diplomat Specialty Pharmacy, subcontracted by our pharmacy benefits manger. Copay on mail order is $15, but on retail has suddenly gone up to $50 this year, per prescription. If a copay assistance plan is available for the meds, it makes the difference moot and I've encouraged other employee/patients to use the program to remain with a pharmacy and arrangement they are comfortable with.

I switched to the mail order even though I didn't have to, to see how it works and spot any problems in the system (and report them--I think I have the ear of the person who directs the program in our employer side of things). And to have standing to file a complaint if necessary. I have probably a week or so more of meds overlap than they would allow, but this is a long-term prescription--they won't go to waste--and this allows me to try it out with confidence.

My one delivery so far has been on time--actually a couple of days early. I have found that the first-line phone answerers are NOT specially trained at on specialty medications or other issues (they couldn't spell or pronounce the medications, and they gave incorrect information on transferring a prescription) and their role seems to be to transfer callers up to the people who do know (and the latter have been helpful and thorough--for example, they knew how the different copay assistance programs worked). They put weird caps on the sealed manufacturer bottles--perhaps they were "easy-open" so I called for my refill to come with the "childproof" caps...hopefully I won't need a can opener. If I get any problems with deliveries, I'm switching back while I still have the option, and raising hell.

Other employees have been pretty upset about the change. Some have a pharmacist they like and who knows all of their medications. Not everyone's home situation allows for deliveries to be left there unguarded, and work is not a place where one wants one's meds to be delivered (especially in a large enterprise where things get signed for by anyone and then mislaid, or things get opened as office policy). And since we are employees, we are not home all day for deliveries!

I absolutely hate this process, not only has my insurance forced me to use their mail order, which is a constant nightmare, they moved every single HIV meds up to Tier 4, meaning, now my meds cost $400.00 a month, I know I'm fortunate to even have that, but after paying 30.00 a month, to go to $400.00 a month, times 3, $1200.00 every time I place an order, I might could come up with 400.00 a month, maybe, but 1200.00??? So I was forced to order my Viraday (yes Viraday, generic Atripla) from overseas and i pay 400.00 for 3 months. I was scared to buy them there at first, but after a year and a half, I know I am not going to be out $400.00. And what about the time they mailed me the wrong prescription, if I was at the pharmacy, i could have corrected it ASAP. Or the time they claimed the pills were on my front porch and I never got them, THAT was a disaster... Had to try and prove my innocence when it wasn't my fault. Oh well, enough of my mail order nightmare.

ExpressScripts, formerly Medco, does a great job, and is very reliable. But yes, that $4k deductible in the first quarter each year is a major shock. And no, the office staff knows nothing about meds.

CVS Pharmacare (specialty division) is very good they are located in monroeville,PA. CVS Pharmacare has many divisions this one is on Mall Blvd. Not sure if you can use your insurance but it's worth a shot.1-800-238-7828.

OMG!!!

I was forced to switch last year by BCBS of NC,

And it was a NIGHTMARE!!!!!! From rude, surly, unprofessional reps to the inability to process the billing to my insurance, to having the meds delivered to my office, because living in NYC and
leaving a package on the doorstoop would be invitine theft, to having ask my HR rep to sign for my meds if/when i am not in the office, that became an outing process itself, to having the HR rep' name on my meds instead of mine,i ended up documenting every call, and email from time and date to the person's name, emailing BCBS, the CEO of Express Scripts and demanding a real person with a real title to call me!!!
It is still a nightmare, but i am getting my meds in a timely manner, and though i will never get back the time i had to put into fighting for my rights, i am now known in my office as the Healthcare czar, because i know who to call and how to resolve problems with our healthcare....
Again, i do miss my neighborhood pharmacist, and the ease for me to get refills!!!! i hope this lawsuit is the first on many to make the necessary changes to our healthcare!

I use Aetna Rx and make it easy for myself by writing "Next Refill Date" on my calendar and refilling online. We MUST take control of our health. I'm not at all trying to be preachy. Just sharing what works for me.

I'm outraged by this arbitrary decision of the private insurance that are forcing us to use a mail order service. Up to today I'm without my HIV med, how can we organize something to make our voice heard and stop this practice? I think it's time to stand up to private insurance and stop their exploitation.

i have mail meds for 4 months, never had problem,love having my med sent UPS they are time always right and i dont call for anything, and slamming meds that are mailed is wrong,so you had a bad one that dont mean all of them are bad. so dont them because you have a bad temper. stop griping and try a differant ne that might work better. Mail Meds is great.

I can really appreciate the problems of mail out drugs. Not only is there the hassle of keeping track of everything (I have 14 different prescriptions) but then there's the ides of medications baking in the mailbox, or being stolen. Fortunately, 2 or 3 years ago my insurance CVS Caremark, allowed us to choose a CVS store over the mail out "service" passing along the additional cost to me of course. Now, I'm considering changing primary doctors since I have a hard time having refills faxed to the pharmacy. Like Roseanne Rosanna Danna used to say, "Just goes to show, if it isn't one thing, it's another!"

Violation of the Interstate Commerce Clause;
Violation of the Sherman Anti-Trust Act;
Violation of federal & state laws prohibiting Restraint of Trade;
Violation of the Patient Bill Of Rights;
Violation of the consumer's fundamental right to choose suppliers in a free market economy;

The list of rights violations is endless...

Why aren't we, as patients, joining forces to go after these insurance company schmucks and hit them all with class-action lawsuits and sue them out of existence ??? They are long overdue for some extremely brutal ass-kicking.

"ExpressScripts, formerly Medco, does a great job, and is very reliable." Wow, they are the company we fought bitterly with for nine months to get a waiver to use our local pharmacy. Our local pharmacy CARES about us and goes out of their way to address/resolve any issues. MedCo/ExpressScripts couldn't give a rat's ass about us and hassled us for the most ridiculous, inconsequential things. We finally got the waiver after they CANCELED our order due to an internal billing error, didn't notify us, and our insurance company was forced to pay for an emergency refill at our local pharmacy. Mail order pharmacies (we've used three different ones) all suck, imo.

I can appreciate your article, and I understand what you're dealing with, but I think it is worth pointing out that not all specialty pharmacies do business this way, and not all retail options are the most convenient.

I used to live in Michigan where I was on their drug assistance program. They gave me the option to do specialty, or I also had a list of retail pharmacies that I could utilize. The problem is that because of where I lived, I still would have had to contact the retail pharmacy days in advance because they would not keep Atripla in stock. I could understand this, it's an expensive med and I didn't live in an area where people were busting down the doors to get it. I had to drive nearly an hour one way every month to get to a large medical system hospital pharmacy to refill my meds. This often turned into a nightmare since I had 2 insurance plans (assistance is always payer of last resort)and the hospital could never get the insurance to go through, so I would often have to wait, sometimes even have to leave and come back. I did choose to go this route because I had never used a specialty pharmacy before and was nervous of the idea of my meds being delivered by mail.

I now live in Illinois where the drug assistance program here requires using CVS Caremark Specialty Pharmacy. In 7 months, I have yet to have a problem. They ALWAYS call me 2 weeks before my current supply would run out, they make sure my order for refill is placed and I generally get my order within a few days, but ALWAYS before my current depletes. I have only had one problem where the shipment was delayed for some reason. I called and spoke with a supervisor who was absolutely compassionate about the problem and told me she would ship a supply out that day so I could have it the next, and I got it.

I realize you were referring to a different company than who I deal with. Like I mentioned previously, it is worth noting that one poorly run organization should not ruin the entire industry.

I have United Health Care in GA. Last year, I had to use the Prescriptions Solutions (now Optum RX). Previously I had been using my neighborhood pharmacy (Publix) and they were great!
The Prescriptions Solution was good, but hated the music while one waited for customer service, then always having to answer their monthly scripted questions.... After the 1st of this year I didn't receive my usual reminder phone call ...I called the prescription part of my insurance and was told since Atripla was no longer a "specialty medication" I could use my neighborhood pharmacy. My doctor refilled the prescription and of course got the call from the pharmacy asking if I knew how much the medication was going to be. I laughed and replied, yes, I know it's going to be around $1400. I pay at the front of the year, then when I meet my copay (1800.) there is no more out off pocket. Still, it's a chunk of change one could use for other things...I think the medicine companies are making as much money off HIV meds as they can, which considering the number of people affected by HIV around the world is just plain greedy! I hope the lawsuits go across the country in regard to insurance companies forcing one to use a particular pharmacy....as with previous posts..I agree! Go Larry Kramer!!!!

I quit Walgreens after they failed to ship my meds on time. Now I'm dealing with Moms Pharmacy, which does a much better job. I don't like having to be home to get my FedEx delivery, but at least they ship them when I still have two weeks of meds left. Retail would still be so much better and less stressful.

I'm going to join in on this subject too!

Like others who've posted, i have OptimumRX. I was FORCED to go to them by my insurer - UnitedHealth.

I won't recount the absolute FRUSTRATION i went thru with this "service." Look, i've worked in the insurance industry and i get how they save money on a select group of drugs by having one central/national Pharmacy to handle these drugs - and save money thru the economies of scale. I get it. BUT, if you're going to force us to move from a national chain pharmacy (I used Walgreens and they are so attentive to filling and refilling scripts - with their email notficiations, voice mail messages and online refill process - they make it EASY to stay compliant), at least make an ATTEMPT to match their service standards.

In fact, there's a part of me that thinks there are some insurance exec's who DON't WANT us to stay compliant on our meds. Why do i say this? Well, why is it that we have to jump thru so many hoops, call-transfers, voicemails and untrained reps?

Like some of the others who posted, i was out of meds, tried for the rush, it was too late, would be off my meds for 5 days - and this happend 3 months in a row - and i CALLED IN TIME! I got an "override" to go to walgreens, but i was told, "YOu only get ONE override." I said, "Ok, so if you guys screw up and it takes 5 days to get meds i could get in 2 hours locally, and i've burned my "override" what are my options?" Ready for this? She said, "Maybe you should call earlier!"

After i bit my tounge, i asked her, "Really, well, according to your rules, i can't order a refill until 5 days before i run out. So if YOU guys screw up - like you have the last 3 months in a row - i'll be out of meds because it takes 5 days to get my meds."

This went on for almost 40 minutes before i finally got to talk to a "manager." I recounted all the last 3 months of issues (yes, she saw it all on the system) and while she promised they would improve on their mistakes, i told her this: "So let me be very clear: This will be the 3rd month in a row i'll miss anywhere from 3 to 5 doses - all due to YOUR company's errors. If i develop an immunity to this medication (i was on a 1 pill a day treatment plan)and my life and health is endangered due to your company's neglegence - will will bring a suit against you."

Well, guess what? I DID have to change my meds due to developing resistence to 2 of the 3 meds in my pill. Oh, and i had taken a resistence test jsut 3 months before and had NONE! So, clearly, those 10-15 days without meds DID impact my health. Now i'm on 5 pills a day instead of one - with some less-than-desierable side effects. I'll deal with that, but NOT a program that makes it easier for me to MISS my meds than to stay compliant!

Look, i'm not whining. I have been poz for 20 years......taking meds all that time...but not until THIS YEAR has it been so difficult to get my medication.

I will be watching this issue carefully.

CVS Mail order is as bad as any other one. Last June I received a refill of 5 different scripts. The day AFTER I received my order, I get a call from CVS about my order that is due to GO OUT. I advised them that I just received and order the previous day! I was very emphatic about them canceling the order they had called about to avert a duplication. The rep assured me that she would do just that and that, furthermore, my insurance and their 'system' wouldn't allow another order to go out because she seen the one I just received in 'the system'. Well 2 days later I received the duplicate order and the REAL nightmare began. CVS would do nothing what so ever to correct the situation. SUPPOSEDLY they were going to research the situation and get back to me to inform me how to return the duplicate order. In the mean time my AMEX card had been charged for the duplicate. After 2 weeks and hearing nothing I called AMEX and asked that the duplicate charge not be honored (They dishonored it!) I had very literally spent 12+ hours on the phone with CVS over the next 4 weeks trying to get this situation corrected, NOTHING! After 6 weeks I took the duplicate package (I never opened it, but KNEW it was a dbl of the previous order) to the post office to have it 'refused' and sent back to CVS. I was sure to get a receipt from the post office for my records. Unfortunately with our insurance I have no other choice in pharmacies, so I am 'stuck' with CVS. Maybe these companies know that this is more often than not the case, hence their lack of regard for their 'customers'.

Larry Kramer is still a powerful voice. He opened up a Pandora's Box of issues. CVS/Caremark has a mixed record of decent service, along with episodes of incredibly careless and stupid mistakes. But the larger issue is really about choice. Under my plan, if medications are purchased from a local pharmacy, I have to pay the full amount in cash and then I'm reimbursed 80 percent. That reimbursement does not always get processsed, and in emergency situations (and there have been many), I wind up paying as much as several thousand dollars up front. During the last snafu with Caremark, I eventually wound up talking to one of the participants on the negotiating committee for my retirement association, who listened with an open mind and took my suggestions to heart. There are other things we can do to change the system. We can complain to the insurance commissions in our state; we can contact our elected representatives in our district; we can file an online complaint with the Better Business Bureau. Nothing will change without activism.

I just recently switched to mail order thru Aetna RX. They are the pharmacy for CVS. I left Rite-Aid for CVS when I started having car problems and found CVS delivered. Well, I paid the price. I had found unknown capsules in my tablet med bottle. They screwed up my orders countless times, I found I was supposed to have co-pays and that by joining the special needs group would not. However, CVS was billing both Medicare AND Medicaid the same amount which ended in double billing and double receivable amounts. All that was needed was a coordination of coverage to straighten it out and NO ONE told me. I immediately went mail order and ALL 12 of my prescriptions were obtained by Aetna and filled and shipped and received by me within 6 days. The mail order at Aetna works 7 days a week on orders. The savings is that the 3 month shipment with a co-pay of just $1.15 generic or $3.50 name brand helps those of us struggling on Soc. Sec. only. Time will tell if I have a problem, but as another person stated in an earlier post, I too have marked my calendar on what day to call for a refill. My AIDS will only be under control, if I control my care and no let the illness control me. Be well all...

Employer's plan I choose [BC/BS] contracts RXs to Express Scripts which periodically "urges" I use their preferred mail order [which forumulary offers only one RX of my five; 2hiv, 3cholesterold/blood pressure) so I retain the "neighborhood" (120-mi. roundtrip) pharmacy] nearly adjacent to HIV care with apparently heavy client-load of HIV customers so full-supply of nearly any type. I **am** finding this discussion interesting, because do have only 1 more year of BC/BS before work ends and move to Medicare. Appears all "something to watch out for" !

just thought i'd add my experience. i've got expresscripts, they have yet to force me to go mail-order, but they call and bug me about it a lot. i've explained to them that until they can accept the copay assistance cards, it's saving me $120 a month to go to walgreens. They don't seem to care, so hopefully they never force the issue.

I was placed in a new Medicare Rx managed program run by SilverScript by my company from which I am on long-term disability. Previously Caremark handled my prescriptions via mail and I was happy with receiving my 3-month supplies of HIV meds and at a low co-payment.

I take 5 HIV meds and although SilverScript's new guidelines determined that Norvir is considered part of the formulary and I can continue to receive a 90-day supply at the same price, the other 4 meds are now considered "specialty meds" and I can only get a 1-month supply AT THE SAME COST I WAS PAYING FOR 3 MONTHS BEFORE!

I have my physician's office completing pre-authorization forms to see if I can qualify for a formulary override and continue to receive 90-day supplies. But it doesn't look promising. My last message to the nurse was to find out why Norvir is considered in the formulary but not the other four meds.

Now regarding the transfer of providers, even though Caremark is actually still filling the prescriptions, after a complete month since the changeover, I still can't access my own medication profile online. In addition, I have spent nearly 4 hours with representatives of SilverScript and Caremark over the last 2 weeks as well and nobody seems to know what is going on.

Another example of this whole mess of Medicare managed programs and insurance companies not doing the right thing. We all know that they love to charge off the "loss" on the retail price so it helps them show lower profits.

Each one of us with similar situations need to challenge the system at every opportunity and let others know so they can keep speaking out against this unjust treatment of people with HIV.

Thanks, POZ Magazine, for providing the impetus for me to speak out.

I had a bad experience with Humana's Right Source Mail order Pharmacy. Some of the pills I received from them though it was about 5 years ago. Some of them were greasy and crumbling and looked like they were home made by amateurs. It was shocking the condition they were in and there was no way I was going to put these meds in my body. I sent them back and they replaced them with acceptable substitutes. Nowadays I am very weary of mail-order pharmacies.

This process is so upsetting for me I have stopped taking my meds all together. It should not be this much of a hassle to access my monthly regiments. So united health can now pay more when I get sick and end up in the hosiptal. I just want to go to walgreens.

I think the author got a few points wrong, every mail-order pharmacy is not a specialty pharmacy. My specialty pharmacy ExactCare here in Ohio..I have a personal contact & access to a personal pharmacist that specializes in HIV. They work with the clients on the packaging they understand the importance of delivery & are VERY responsive to their clients needs.

I use Nashville Pharmacy... it's a mail order pharmacy. I've not had any trouble from them yet. I've been on the HIV meds. for going on 1 1/2 yrs. I do miss going to my local pharmacy to get my meds. but so far so good.

I live in California, but work for a company based out of Texas so I HAVE to use BCBS of TX. They don't even bother to subcontract out, the have opened their OWN mail order and forced all "Maintenance Drugs" to go mail order 90 day supply. Where do I start? My mail order house is 4 states away, Half my meds get put on hold (they need to be reviewed by a pharmacist), even though it is the same drug I have taken for 7 years with no changes. Shipments have been delayed by storms, holidays, and many other reasons. I have had shipments stolen off my porch (they ship USPS).

I sure miss the days I could run down to Wallgreens!

I live in the desert near palm springs. I thought, hey, I like the idea of three months of meds at once, which was an option if I swallowed the bitter pill of mail order. (I have a pharmacist uncle and had a pharmacist grandfather and they hated mail order for all the right reasons, including the way it cut into their own business).

These a**holes mailed my meds in an envelope, uninsulated, and it sat in my mailbox for like seven hours when it was 115 F outside. The temperature inside the (black) mailbox was well over 200 degrees. I called them. They said send it back and we'll send new meds. They sent again in the same packaging. The package insert is explicit in the temperature range for storing these overpriced meds (remember who was on the Gilead board of directors, sports fans? A former secretary of defense who is, IMHO, a war criminal?).

I complained to the state board of Pharmacy; they found the wonderful Texas-based pharma company guilty of sh*tty work and fined them a whopping $250 dollars.

Stick with your local pharmacy. I sure do. And I'm considering moving to a generic three pill a day to pull the profit rug out from under the creeps at Gilead. A patent for a delivery system, indeed. How many millions in Africa have died because of "patent protection," now, wait, profit protection, for pharma?

Grrrrrr.

I was DX. 2000 with hiv,I only had to take 2 pills,Atripla and bactrim,and was glad to because I knew ppl that had to take up to 15 pills per day.I work was working in a cardiac unit and had great Ins,so I thought,all prescribtions were filled with no problem.Then the day came when my so called good ins,started giving me hassels!!!Needles to say,I was soooo frausted and gace up,did`nt take my prescibtions for 4yrs.(which i knew better,but really didnt care anymore)Just wanted to end my life!To make a long story short,I finally got back on ny treatment and now have to take 4 pills.I am getting my meds from the state of Texas!Thank God!!!I also do pray that the lawsuit goes thru....

I pray that "We the People" get help to save our lifes easy!

I couldn't agree more with this article. I stopped using Aetna's mail order pharmacy because they required my doctor to verbally approve of a new prescription after my old prescription had run out of refills. My doctor is busy and hard to get in touch with. He left 3 voicemails, but they still refused to fill my prescription. They wouldn't accept the paper prescription he gave me either. I was responsible and called a week ahead of time, but it was of no use. After 1 day without meds, I went to the pharmacy. Oh and they never called me to update methat they still hadn't received verbal authorization. And it was my responsibility to continually follow-up, in addition to having to call every month to remind them I needed a refill. Systems can be designed to remind them I'm in need of a refill and to call me. However, that seems to be too much to ask. And not even understanding the risk we encounter going without and the seriousness of the issue is frankly appalling and irresponsible.

My mail order pharmacy has been sending me Trizivir for years. The bottle comes in a box. A few shipments of the meds, the pills looked different--brown with yellow specks not the usual blue. The first time I actually discarded. But then, since meds often do change their color and shapes, I took them.

Turns out they were not Trizivir and sure enough, my viral load spiked from undetectable to over a million. Not to mention drops in CD4s and a few infections that almost killed me. This all happened this past December 2012.

I am of course on new meds now but wow, it seems like there is no way that I can get the pharmacy or Smith-Kline to take responsibility.

Has anyone else had this situation?

I am lucky enough to be what is considered a long time survivor. When I was forced to get my meds via mail order the nightmare began. I have experienced everything from lost perscriptions in tha actual mail-order pharmacy to late damaged deliveries. Not to mention the incompetence of the system and the people working within it. SOMETHING NEEDS TO BE DONE !!

It is a real shame, because it really needn't be like that.

Here in the UK, I actively chose to have my biannual supply of six months worth of meds delivered by an online speciality pharmacy - and in more than six years of using that service, I have never had a late or wrong delivery. What is more, I get to pick exactly when I want them anonymously delivered (not just date, but also time) and also where (home, office, local post office etc.).

Properly implemented, it can be a fantastic service that fits around your life and removes yet another intrusive aspect of living with HIV .. but poorly implemented, it has unspeakable consequences.

I do not have insurance and I do not have a Doctor at this time for a lot of federal clinic are taking a stand that they do not care and the HIV person doesn't matter, but come on in AIDS folks for their is a big pot of money they can draw from when one gets their AIDS award letter. So all the winning about how one gets their meds is a little class issue for me, where the AIDS folks that are blessed enough to have disability and health insurance are whining of system changes. Although HIV people that are still not on disability or do not have AIDS have to fight each day for a doctor’s appointment, fight for pills and fight for labs and be humiliated at every turn to prove their poverty or indigent status. This is funny in some since for my mother who is 74 years old and on Medicare can not afford some of her pills and she choices at times to decline treatment, because of cost or doesn't go to the doctor because she afraid that a big bill will come in the mail after treatment. But again the AIDS folks are leading the way for their group to whine about a system change when others are still not even getting treatment. Again the HIV person voice is mute and a second class patient unless they join the AIDS upper-class by getting sick and stacking the paper work just right to get an Official AIDS award letter from the Federal Disability pile of money. Wake up people, there are others in need and with more serious treatment issues than just the Disabled AIDS person. I will still advocate for people with AIDS to live and prosper , plus stand up loudly for people that are too. Maybe I will take 6 months off from looking for treatment or taking my pills (will save some money for others to get treatment) for it is not new for this HIV person, just a part of the risk to stay alive in a system that is not perfect, but I will live and love another day, with joy and hope for this day.

I am being forced to use CuraScript and recently placed my first order. It has been a ridiculous experience and if I wasn't forced to use them I would drop them immediately. After numerous calls orchestrating the order process between my doctor and CuraScript and having to jump thru hoops to get a 90 day vs 30 day presecription it took 8 days to receive my prescription. I was happy to receive the package and then I opened the box only to find that they sent 30 day supply instead of 90! Their staff must be horribly under trained or they need to reevaluate their hiring process. I called to inquire as to why only 30 days of meds were sent and now have been on hold long enough to write this email. Very frustrating to say the least.

I have the exact same problems with this company. Optumrx. United Healthcare forces me to use this company....should be a lawsuit against this practice.

My meds are delivered UPS. Was delivered to a neighbor 6 houses away and opened when that neighbor brought them to me. Address was clearly labeled. House number bold and visible in house. All i got from UPS is sorry and mistakes happen. Hmmm t 2 mistakes by my count. Wrong house and opened. I am sickened by my personal medical disposition now being neighborhood business. Is there any liability on UPS concerning hippa and my rights to privacy?

Our insurance also mandates we use mail order for maintenance medications and it sucks. My husband is on several different medications, some quite expensive (no generic equivalent). One prescription is a controlled substance. Every time we have to get refills, I submit the required written prescription along with the paperwork and every time I order refills, we wait and wait and wait, oftentimes running out of medications and having to pay out of pocket for a 2 week supply. Thank goodness we have an understanding doctor. This is not a "cost efficient" measure for us, but no one really cares about the consumer. It's all about how many pennies the insurance companies can save by giving people no other option for coverage as well as making it a major hassle for healthcare providers when their patients have to use mail order.

I love the argument about the right to privacy and HIPPA for what a joke. In my opinion HIPPA has almost destroyed any trust or relationship building with medical providers, and no wonder the Doctors do not talk to patients for their is always a fearful patient that is waiting to file a law suit because of their rights to hide in shame. HIPPA in my opinion is a big joke and has done nothing for the American Consumer other than to confirm that lying and hiding is a value and a right to the healthcare consumer, while breaking down any trust and honest relationship with a healthcare provider. Not to mention costing millions in paper work and profits for lawyers. The right to privacy has always been clear in the medical field and in a perfect world it would be honored too.

If we all start to write letters to our congressmen and state authorities it may get something done. I read Larry Kramer's article and immediately got in front of my computer and put a letter together which I've sent to Gov. Cuomo, Sen. Schumer, and Christine Quinn since I am a NY state resident. I have Anthem and I'm afraid the letter will come in the mail soon advising to go with mail order. I'm going to give them hell if that ever happens and will refuse to fill my meds in protest. I know it isn't smart but it may get something done. This is getting ridiculous to say the least so c'mon get in front of those laptops and start writing letters today!!!

Indeed, this calls for a lawsuit. If your neighbor can attest to opening the package then UPS broke the HIPAA laws although you will have to go public on the first place to prove a company like UPS of wrong doing. Can you select delivery to your workplace or a relative or friend who knows about you?

Actually, i have several family and friends who work in Health Information, and would agree with you. For those of us who are poz, HIPAA has also proven itself a gigantic joke in terms of protecting our privacy and freedom. provider/patient confidentiality is necessary, but I think a lot of people from all over the medical spectrum are in agreement that this is a law which needs to be trashed, as it's caused a lot of headache while doing nothing to actually address the bad eggs who don't care about privacy.

I was just diagnosed in May. I have been dealing with the pharmacy that resides in the university based medical center where I receive treatment. Recently my company switched to Optimum Rx. I was out of my meds and went to get my prescription filled. It took 5 heated discussions and the treat of a law suit to get my prescription filled. Optimum Rx is also saying I must get my hiv meds through mail order. I have the human relations representative with my company and will simultaneously file a complaint with the better business bureau, the attorney's general office and the department of licensing and regulation. This multi-prong attack has proved effective in other situations. Wish me luck. And please, don't get mad, get mad as hell and turn that energy into well thought out activity.

I use Express Scripts and I get a 90 day supply of Atripla for $80.00. I enrolled in the Atripla Assistance progam offered by the drug maker and they reimburse me the $80.00. I find Express Scripts to be a well run organization. I stay on top of them and monitor my supply so that I have no gaps in my treatment. My personal physician will contact express scripts to renew the perscription every three months and I never have a gap in receiving my meds.

I am fortunate and my heart goes out to all those who have difficulty paying for and obtaining their meds. Shouldn't be that way but sometimes you just have to fight......

This HIV person is all for mail order drugs if it reduces cost and allow for more people to include HIV people, AIDS people or ALL people to have the same opportunity as Official Award Winning AIDS people that are on disability with Medicare, yes Medicare for All with Mail order drugs. The stopping of mail order folks are drawing a line in the sand for this HIV person to call for the same entitlements for AIDS folks of life long Healthcare to include all people in the USA, including HIV people. Having no Healthcare as a HIV person SUCKS, so with all due respect AIDS people I will not write a letter to congress for your cause to stop mail order RXs, but will ask you folks to write a letter to congress and state assemblies for Medical Care for all People in the USA.

Well, good news to all of you living in the state on CA who were getting mail order thru companies associated with Blue Cross Blue Shield. Yesterday after so much pressure from the Aids Healthcare Foundation and other sources, Blue Cross decided to let it's members use a pharmacy of their choice an not be tide up to their mail order system. I'm sure down the line other companies will follow suit. Congratulations to AHF and all those other folks who made this possible. Now let's get it happening all over the other states.

The good news that AHF won something for I think it is very interesting that AHF has it's own pharmacies and at one time giving clients 20 dollars in Florida as an incentive to switch to their pharmacies.. I do not think this is about a right for people in California in this movement to choose one's Pharmacy, for I think in this case it is about AIDS Inc again to bully policy for their own personal empire of money. Yes, AHF may have set up a spin machine with a few bullet points that have no merit at all in this argument of one having a right to choose a Pharmacy. It is in my opinion about AHF and others using consumer to think this is a injustice and to bring monies back to their own investments dollars with the player being AHF and Mr. Kramer. I think their is a need to expand these congratulations to open up a full federal investigation into AHF and their self interest or need to recoup their loses and bring the consumer back into their Pharmacies. Yes lets open up the conversation and have transparency for it is a little two early for congratulations in my opinion. Smile Luis R for do you work for AHF or a Mom and Pop friends/ investors.

This is a funnest movement I have ever read, for not one argument is logical about having the right to choice a pharmacy when one is using a secondary broker call an insurance company or Medicare funders. One has the right to choose when one is paying for it out of pocket. It is very funny who the player are in this movement.
Like
AHF who has it own pharmacy and a personal interest to bring their consumers back into their pharmacies.

Mom and Pop pharmacies and who in these writing above have an interest or moneys invested from the New York specialty pharmacy.

Yes interesting indeed.

I think it is another bulling tactic from the all might AHF and their spin machine, for not months ago a news reel ran her in California where AHF had an African American Woman start this advocacy Champaign to announce this great miss carriage of justice and again the bullet points had no merit at all in my opinion. Then the New York people came into the picture home of the specialty chain called Mom and Pop. For I wonder how many folks in the above writing work for AHF or have investment dollars in the recently sold MOM and Pops pharmacy. Smile Luis R.

This is not about consumer rights it is about money and for the money to come back to AIDS Inc in my opinion. Where is the transparency?

I learn something in my years of,advocates/lobbyist pushing new public policy and the machines that are build in the name of the people and how they can change to spin almost any thing. Many have been working for some kind of Universal access for years concerning health and treatment, for this guy knows the care is only for the rich in most environments. I not for Insurance companies to bully any one with mail order, however did any one think they were going to sit idle to lose millions in profits as the negotiation begin for the masses. AHF is famous for bringing in their lawyer on many fronts, however I might warn AHF in their greedy ways and lack of care for the client, although they spin it like they are the AID's God, the clients get stumped on if they ask the wrong questions. I might also state that AHF is breaking HIPPA Laws by the word AIDS in their name, for what if a neighbor see someone go into their branded clinic or Branded New Pharmacies. I would like to thank the folks that are coming forward to hold the insurance companies to the mat and joining in to mold policy for all in the USA, even if it is self motivated for them and their health and treatment needs.

I purchased them from an online pharmacy once, they came through and everything was fine. When I went to re order the website no longer existed and they were calling my phone every few days off a private number to see if I wanted to order more!

I hate Curascript! I hate all mail order medication services. We are trapped in a system which is run by demagogues.

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This page contains a single entry by Oriol R. Gutierrez Jr. published on January 28, 2013 11:04 AM.

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