Another ” I CANNOT BELIEVE THIS” story
by Lilian Mustelier
Like in any story there is a beginning. It was a cold foggy day when I found myself assisting/rescuing three young people, which were involved in a fatal car accident. A few days later I came down with a terrible cold that persisted for some time. I finally went to the Doctor. With his help I got better after a few weeks. I then noticed my heart skipping, pounding and racing. I was refereed to a Cardiologist. He determined I was stressed out and should change my life style. In the early 1980s men and women were not quite equal when it came to treatment of heart disease. Shortly there after I went to Germany to visit my mother, she moved there from Beirut, after the bombing of the American Embassy. As we were laughing and having a great time crossing a street, I collapsed. The Medics rushed me from Nuremberg to Darmstadt, a distance of several hundred miles, in order to get treatment from one of the greatest Cardiologists in Germany… FREE OF CHARGE… This Doctor was able to diagnose and determine the exact time when this affliction started. At the time of the cold, which was a virus, not a cold.
The untreated virus had affected the function of a heart valve. I was released from the hospital and taken back to Nuremberg by Taxi…FREE OF CHARGE… Medicine prescribed was Rythmol for heart arrhythmia and Dyhitrogot. The latter was to help with circulatory and weather related issues since I am very affected by weather, volcanoes and earthquakes.
When I returned to the United States, armed with an ample supply of medication I was lucky to be accepted by a very good Internist who remained my doctor for 20-plus years.
We soon discovered Dyhitrigot was not available in the US. The American health care system does not recognize weather related circulatory ailments as an illness. Rythmol was not available in the US either.
I have multiple allergies to medication such as Novocain and others, so my Doctor hospitalized me for several days in order to find a heart medication I was not allergic to and was easy to tolerate. After several scary trials and errors we decided on SECTROL, an American made SAFE hydrophilic beta-adrenoreceptor blocking agent used for, in part, hypertension (high blood pressure) and in my case Ventricular Arrhythmia. If memory serves me correctly… I am NOT sure if it is in this part of my statement… Sectrol was manufactured by E.S.P. Pharmaceutical. Sectrol is pricey, so when 10 years later, my now Insurance DSHS, would frown on the price. Every 6 month we have to do battle and prove this is the Only medication I can take for said condition. We attempted to switch to a generic brand made by MILAN…. Again, to the best of my recollection… I was allergic to some of the fillers and remained on SECTROL for several more years. At one point the manufacturer, through the Doctor, supplied me with 3-months of SECTROL… FREE OF CHARGE… until the dispute about coverage by the Insurance was settled, for another 6 month.
In 2001/2002, I believe, my then pharmacy… Albertsons… said Sectrol was no longer available through their distributor. It took several days to locate a Drugstore, actually the only pharmacy which still had access to the medication. I called E.S.P. Pharmaceutical to ask why it was so complicated to locate the pills and was told a different company…. Reddy Pharmaceuticals, LLC was now the maker of SECROL. I called them to inquire of their plans and to make sure I would be able to continue to buy SECTROL. They assured me that there were no plans to discontinue the product.
In May of 2007, as I went to pick up my prescription, my pharmacy notified me SECTROL was no longer being manufactured by anyone. Again I called Reddy Pharma. They assured me this was incorrect, the drug was still being made. Unable to convince anyone I agreed to give Rythmol… it is available in the Us at this time. I was no longer able to tolerare said medicine. I dealt with a parade of doctors, which were not willing to fill out lengthy forms and explanations for the Insurance Company.
In August of 2006 I contracted a bacterial infection, the mismatching of a cocktail of antibiotics injured a nerve in my leg. Because of the refusal of the doctor to prescribe Tylenol #3, the only compatible painpills I can take, I was in excruciating pain and unable to walk for 7 month. Between unnessesaryly changeing medications several times and the toll the constand pain took on me, I fainted. I was seen my a Local Cardiologist. By now I had developed a small leak in my heart valve. Again we attempted to try a generic version of SECTROL. The side effects were terrible, it was necessary for me to go to the hospital. My body temperature was 96.2 and the edema very noticeable. Out of desperation I dismantled parts of my house and did find a bottle of SECTROL. It was old, I must have stashed is for an emergency, a trip or something. After only 3 days I felt much better, edema gone and my temperature was back to normal.
I called Reddy Pharma and was told SECTROL was still manufactured and they gave me a list of distributors. They also supplied me with the names of drugstores which had access to said distributors.
Out of 7… Walgreens, Target, Walmart, Shopko, Fred Meyers, Albertsons and Rite Aid… only Rite Aid had a listing of SECTROL and attempted to order the product. According to the distributor SECTROL was NO LONGER on the market.
I called Reddy Pharma and it was NOT true. My conversation with RITE AID went not well.
I called Reddy Pharma, according to their records the distributor had picked up shipment of the drug for both November and December.
I called Rite Aid, again they did not believe me.
I called Reddy Pharma and they, Reddy, were told by their own distributor, the product was no longer in production. Somehow Reddy Pharma located a bottle of pills for me.
I called Rite Aid, they quoted a price of $284 to me. I suggested they again contact the Insurance. The meds were not covered … they were nonexistent according to the insurance… Rite Aid refused to order the emergency shipment Reddy Pharma had arranged for. I was almost out of pills.
I called Rite Aid and was told the pills were being shipped by Reddy Pharma to the Doctor’s office.
I called Reddy Pharma. Reddy and I… on a 3-way conversation … strongly suggested they, Rite AID order the emergency shipment … the statement as to a shipment … free of charge … was unknown to Reddy and myself. The Pharmacist at Rite Aid stated since there was no insurance coverage and I was unable to pay the $391 needed for me to pick up the pills, he was not going to order them. He stated no-one else ever requested said pills… The Reddy Representative said: “I wonder why”… Anyway, Rite Aid was not going to order because he was afraid to get stuck with a product no one uses. Reddy said they would buy them back … themselves. I assured them a friend had offered to pay for at least part of the shipment, which would give me time to make some other arrangement. After some persuasion eventually Rite Aid gave in… It would take 3-4 business days. Reddy pointed out since it was a special shipment they should arrive the next day. We made Rite Aid aware I was out of pills with a good possibility to go into heart failure.
Rite Aid did not order the pills.
The next day I called the State of Washington. They filed a grievance and stated they were investigating my claim.
The next day DSHS called and explained they were not paying $425 for a medicine not on their coverage list, in essence nonexistent to them. I told them I had hand-carried all necessary documents to Rite Aid.
They also told me…I did not know this … that any drugstore under contract with DSHS was forbidden to sell medicine for cash covered by anyone covered by their insurance. I lost it and imagined myself 6 feet under, since now I was not even allowed to buy them myself. I pointed out the price increase from $284-$391-$425 in two weeks. The Lady from the State said there was nothing else they could do, good thing Reddy Pharma was giving them to me. I pointed out that was never any part of any conversation with Reddy and referred her to the Company, which somehow appeared to give me more validity.
The next day the State of Washington called telling me they would pay for the pills for 1 year to make sure Rite Aid was finally ordering them. I did not know this either, my physician was on a registry with the insurance which made concession for people with special needs to allow payment of drugs otherwise not covered. Investigations have been ordered and the word extortion came up.
Rite Aid ordered the emergency shipment Reddy Pharma had arranged for.
Fife days without SECTRAL forced me to take a generic version… PATENT PENDING… terrible allergic reactions.
I HAVE MY SECTROL… I called Rite Aid and told them “Thank You.” I hope to feel better in a few days. This story has no ending at this time, it is ongoing…
Here are my personal thoughts:
Most of us have seen Michael Moore’s SICKO by now. Comcast features it On Demand at the moment.
Many of us have medical problems, many of us live on fixed incomes. Many of us just don’t earn enough.
We settle for the lesser evil… for the most part….becourse we have little choices.
Some of us would like to know where our doctors were educated.
Some of us would like to know if our Pharmacist is a caring person, who understands the
sometimes fatal consequences of taken certain medications or the lack thereof.
Some of us would like to know if the doctors and pharmacists know if a certain drug is approved for human consumption.
Some of us would like to know the place of origin of said drug.
Some of us like to know if doctors understand the function and safety of a certain drug, rather than passing out samples left for them, so we can see for ourseves if they work for us.
Some of us would like a doctor or pharmacist to listen when we point out problems with a certain remedy. Rather than treating us like drug addicts and/or people of little to no means.
Some of us actually know our bodies, once we start pucking, go into seizures or pass out, we recognize we have a problem.
Some of us like to know what happens to drugs after they leave the manufacturer.
Some of us like to know what happens to distributors that lie to healthcare providers about the avaliability of merchandise in their possetion.
Some of us like to know why it is so freaking complecated to believe a patient actually knows what he/she is talking about.
If you yourself or a relative run into similar problems PLEASE DON’T GIVE UP. Call the appropriate agencies and Companies. Ask if your Doctor is on the special needs list. Believe the complaints about side effects you or your loved ones experience. Question and demand results! So what if your finger gets sore from redialing all day! So what if you have to push press1 for English all day! This is America!
Most of us are aware of the fact we will die…one day. Most of us prefer to die from natural causes rather than negligence or even criminal behavior of some.
My obituary would have read: After struggling with heart disease for many years Lillian lost her battle.
BULL! My battle was with the suppliers and people unwilling to do their job! THIS COULD HAPPEN TO YOU!
What ever may be said about drug companies….. Reddy Pharmacuticals, especially Richard, saved my butt by persistence and also showed me much compassion during this unbelievable experience.
Unfortunately Rite Aid is the only Pharmacy in Washington State which now remotely knows how to order SECROL. For those of you financially more fortunate please consider gift cards for Pharmacies for your friends and others.
I am the Queen of chemical allergies. Since 1984 Sectrol have never given me any problems, it is American made and SAFE. There are several factors to consider, such as drug interactions and I wear a medical alert bracelet stating I take the drug. I am hopeful medics will check interactions, in my case so far they have.
And now I want my sticker!
Good health to you!
Reproduction of this article permitted. Fatima ‘Lilian’ Mustelier