Paying too much for your Prescription Drugs?

[NoExcuses]

Think TOBI or pulmozyme is expensive? Not as expensive as going into the hospital..... (these meds are shown to keep CF patients out of the hospital)


<b><u>New Study Finds Medicines Save Lives, Reduce Overall Healthcare Costs </b></u>

12 Aug 2006

Tremendous progress is being made to save and extend lives, prevent or slow disease progression, and reduce or control overall healthcare costs, according to a new survey of peer-reviewed literature released today by the Pharmaceutical Research and Manufacturers of America (PhRMA).

The publication, "The Value of Medicines: Facts and Figures 2006," compiles facts, trends and data that shows how prescription medicines are helping to improve the quality of healthcare for patients and to meeting America's future healthcare needs.

"We are in the midst of a real healthcare revolution," said Billy Tauzin, PhRMA President and CEO. "Prescription medicines play a vital part in helping Americans stay healthy, fight disease, and live longer, more productive lives. Better yet, medicines now being developed will do even more to help patients and doctors treat conditions like diabetes, cancer, AIDS and Alzheimer's disease, to name just a few."

The Value of Medicines highlights how <u>prescription medicines help improve individual health and control overall healthcare costs by preventing disease, reducing the need for surgeries and long hospitalizations and speeding recovery. </u>Some significant facts found in The Value of Medicines include:

-- New medicines generated 40 percent of the two-year gain in life expectancy achieved in 52 countries between 1986 and 2000.

-- AIDS death rates in the U.S. dropped about 70 percent since the mid- 1990s with the development of a new wave of medicines to treat HIV/AIDS.

-- Available cancer medicines have tripled since 1971 and these new drugs account for 50 to 60 percent of the increases in six-year cancer survival rates since 1975.

-- Cancer death rates decreased in 2003 -- for the first time in 70 years.

"By recognizing that prescription medicines are helping to make patients healthier, we can design healthcare policies that truly put patients first. The Value of Medicines helps make the connection clear," said Tauzin.

The Pharmaceutical Research and Manufacturers of America (PhRMA) represents the country's leading pharmaceutical research and biotechnology companies, which are devoted to inventing medicines that allow patients to live longer, healthier, and more productive lives. PhRMA companies are leading the way in the search for new cures. <b>PhRMA members alone invested an estimated $39.4 billion in 2005 in discovering and developing new medicines. Industry- wide research and investment reached a record $51.3 billion in 2005. </b>

 

[EnergyGal]

This is wonderful news. Now it would be great if people who have no insurance would be able to afford these great drugs. I know there are programs but they have to jump through hoops and they can never get them right away to help them when they need them most.

 

[anonymous]

Totally agree with Risa. Try being uninsured and paying $1500 or $3500 a month for one med!

Not only that I think sometimes doctors tend to push aside older drugs when they could be really helpful. Take me for instance....I've been through MANY inhaled drugs and antibiotics. Still having issues. Finally someone suggests trying Cromolyn and Mucomyst. And guess what? Taking those two I am healthier than I ever have been.

Cost of Cromolyn? $75 for 6 weeks worth. MucoMyst? $70 for 5 weeks worth

Compare that to Pulmozyme at $1500 and Pulmicort at almost $500. Neither of which really helped me.

 

[Ender]

Is cromolyn kinda the same as intal? I'm actually going to look into that. Also since mucomyst is just NAC, which is need for gsh production, it will go well together when i start using inhaled gsh (on hold cause of $$)

In my personal opinion, I think the inflammation and the accumulation of white blood cells should be more of a focus, rather than getting the stuff out. I think that IS the major contributing factor to lung decline.

Take Jen for instance. She is 34 ( think) and is on a lot of prednisone. That does two things. Lowers immune response (less of those damn white blood cells in the lungs causing crap) and reduces inflammation. And her lungs are doing really well (right Jen? hehe)

She might get more infections because of the lower level of white blood cells, but i think it does less damage to the lungs.

I know they tested a drug to help with the white blood cells recruiting others and junking up the lungs, but it was too powerful and caused too low of a response from the cells.

Why is it that cf gets worse as we get older? Is it a gradual build up of white blood cells in the lungs, fueling the inflammation/recruiting cycle that white blood cells increase.

Why is it that most of us are really healthy in our younger years, but once we reach around 15-20, we start to go downhill?

Anyways, anything that can reduce the craziness of the white blood cells in the lungs is a good thing, so I'm gonna ask my doc bout this.

I love this site.

Kiel

 

[amber682]

Can I butt in and ask a quick question? What is NAC? I've read a few threads about this and GSH. I understand what they're being used for, but don't completely understand what they are. (Or what the initials stand for)

 

[Ender]

NAC is N-acetyl cysteine. It, with glutamic acid and glycine are the preccursors for GSH. GSH is glutathione, which is considered the most important antioxidants (needed basically to clean up the junk in our bodies).

It has been proven that GSH levels in the blood of individuals with cf are significantly lower than the average person. I guess they think that this imbalance causes a lot more cellular damage. Also with people that have something like cf, they have a lot of stress on their bodies, which depletes gsh in the cells even more. So, if you are given NAC they hope to bring up GSH as well.

NAC can also break down disulfide bonds into two sulfhydryl groups. This breaks up the proteins present in the mucus of cf patients, thereby thinning it and making easer to get out. That's what mucomyst is.

NAC does raise the levels of gluthathione in the blood. The problem is is that the cftr channel is also responsible for exporting it outside the cell wall where it is needed. So while there is more gsh being made, it can't go out of the cell where it can soak up damage, make things run smooth.

The basis of GSH therapy is to get the GSH to the outside of the cells via inhalation and oral therapy. That's why there are a lot of being trying this now, with some pretty interesting results (i posted all that earlier)

What's also great about gsh is that you can take more of it, and it shows virtually no harmful reactions, while NAC can actually be bad for you if taken too much. So you can get it to the outside of the cell where needed and take lots of it without side affects. Therapy was suggested at 30mg/pound. So you're talking in the grams.

A new way of using the gsh to get into the blood is using liposomal gsh. People reported feeling better on it, and they actually tested someone to see if the GSH had increased in their plasma. It increase the red blood cell glutathione level from the 100's to the 500's (of whatever unit they used to measure the concentration). Normal people have around 400. With this meathod you can use a lot less with great results, because a lot more is getting absorbed.

The GSH is encapsuled in kinda lipid like structures, and are more easily absorbed in the bloodstream, while as the powder was found to be significantly destroyed in the lungs.

Ok that was a bit long winded, but you get the drift. It's interesting stuff, for sure.

Kiel

 

[amber682]

Thanks, you definately cleared things up for me. I've been following these NAC/GSH threads with interest for a while now. I knew what it did, but I just wasn't completely sure what it was. Thanks again<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ender]

I wonder if anyone has tried a combination of liposomal gsh for extra cellular GSH levels, and then inhaled mucomyst NAC for both its dual action for increases GSH levels in the intracellular fluid (and perhaps a little in the outside as well), and making the mucus thinner physically in itself.

I'll post it on the yahoo group and see if anyone has tried that or if it's a good idea, rather than inhaling the gsh directly as well. Theres a lot of members there trying GSH, and the original amazing lady that thought this up is hosting it and runs abstracts (the ones i post). They are a great wealth of knowldege. That group is about is cf research, rather than this site being that and kinda more personal things as well.

Sounds exciting.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Totally agree with Risa. Try being uninsured and paying $1500 or $3500 a month for one med!


.</end quote></div>

If u can't afford those meds (no insurance) the companies help you out.

And if yor'e poor, there's Medicaid. And if you're old, there's Medicare.

 

[kayleesgrandma]

You guys are such a wealth of knowledge--I want thank you . I'm always getting razzed, here at work, about killing trees 'cause of all the stuff I print off of the site. I have a big, thick notebook I keep it in. But I just wanted to thank you all for keeping the rest of us posted. I wouldn't know where to begin, much less, ever heard of, some of the stuff you post here. Just wanted you all to know I appreciate you.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kayleesgrandma</b></i>
I'm always getting razzed, here at work, about killing trees 'cause of all the stuff I print off of the site. I h.</end quote></div>


Trees grow back. No worries.

 

[EnergyGal]

I know that some people for whatever reason have to jump through hoops to get their medications. I have been fortunate with my past private insurance and through Medicare. Some patients have it tough but then later on they get it straightened out. We have a Mediacally needy program here in Florida I believe it is part of Medicaid but Not sure.

here is a link that I found on this site about health care that I thought was interesting.
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=3046&highlight_key=y&keyword1=state%20or%20country">http://forums.cysticfibrosis.c...1=state%20or%20country</a>

 

[anonymous]

Amy, I honestly think you're a wealth of information when it comes to drugs. Unfortunately, however, it's <b>not</b> just a matter of "medicaid, medicare, RX programs". It is honestly not nearly as easy to get aid as you think it is. There truelly are a huge amount of people in the US who <i><b>cannot, through any fault, effort, or means of their own,</b></i> get coverage. And, then there are lots of us who work for smaller employers (I might add, smaller employers, combined, employ many more people than all of the large corps combined). Smaller employers don't have leveraging power and typically have worse coverage. We make a decent wage, have a decent home, but live well below our means in order to spend tens of thousands a year on medical coverage, copays, and coinsurance. We make too much to get aid but not enough to be comfortably afford the amount we have to spend. And, yes, we do make the tough choice and just do without decent cars, vacations, etc. It's just not as easy as you make it sound. Sorry for the little rant, I just think it needed saying.

 

[JazzysMom]

We have great coverage prescription coverage through my husbands job. He can keep it upon retirement for a small contribution. BUT I will admit that even with this great coverage if you are filling 5, 10 or 20 meds a month (we all are on some type of med) that even the copays add up. I cant imagine having to flip the whole bill. Many "working poor" fall thru the holes of benefit coverage. Not poor enough to be eligible, but most certainly not rich enough to handle things on their own easily if at all. Even paying for Medicare Part D now.....you have a premium & quite a bit of out of pocket expenses depending on the plan. My husband didnt realize how screwed I would be without his great coverage. The programs that the companies offer usually are based somewhere along poverty guidelines or require you not to have any insurance coverage of any kind to be eligible. Again it makes it hard for the "working poor" to get that little extra boost & I am not referring to the protein shake! LOL!

 

[Scarlett81]

Co pays do add up. But I just think about people with cf all around the world-who don't have what we have. I copied thia from a transcript from CNN. Little long, but heart wrenching.


INIGO GILMORE, CNN CORRESPONDENT (voice-over): For Asma Al Sayedi (ph), it's an agonizing decline. The cancer is eating through her body, unchecked. Her pain, audible in desperate whimpers.

Just a month ago, there had been some hope. She was receiving treatment in an Israeli hospital and was about to start a round of chemotherapy. But when the Hamas government was sworn in, she was bundled out and returned to Gaza to a hospital with almost no drugs. The supplies no longer reach here after Israel closed the main crossing to Gaza.

Out in the corridor, her brother prays for deliverance. Asma's (ph) hospital bed is fast becoming her death bed.

(on camera): You can't give her any chemotherapy?

UNIDENTIFIED MALE: We haven't any chemotherapy to give here.

GILMORE: So what is going to happen to her?

UNIDENTIFIED MALE: Nothing. Her case is deteriorated now and she's very close to death.

GILMORE: For many of these patients in this hospital, time is clearly running out. The medicines are almost finished, and it's not clear if or when any new supplies will arrive.

(voice-over): For the director of Al Shifa Hospital, Ibrahim al Habbash, this is a crisis within a crisis. He says that since Hamas took over, money channeled from the European Union to the health ministry has stopped. His hospital already had some problems with shortages. He took me to the renal unit, where they have run out of the most basic supplies. In the corridor, he stopped to talk to a 15- year-old girl who had been waiting all day for dialysis treatment.

IBRAHMI AL HABBASH, DIRECTOR, SHIFA HOSPITAL: She must wait because we have six machines which are stopped because it needs some piece which must be brought from Israel (INAUDIBLE) in West Bank.

GILMORE: Inside the children's ward, a mother tends to her daughter. She's 19, but looks like a child.
HABBASH: Critical ill.

GILMORE: There's not even plasters to tape the tubes to the patients' swollen arms, and it's not clear how much longer this girl will receive treatment. The ward is out of specialist filters and some of the most important drugs. The doctor in charge of the ward offers a grim prognosis.

UNIDENTIFIED MALE: We need drugs for the patients on the -- the patients of kidney transplantation and the patients on hemodialysis. We have a shortage of drugs, a (INAUDIBLE) of drugs for these two types of patients.

GILMORE (on camera): What happens if you don't get them?

UNIDENTIFIED MALE: They will die.

GILMORE (voice-over): As chief of hospital lurches from crisis to crisis, doctors and nurses, like other Palestinian Authority employees, are now working around the clock without pay.

Those Palestinians relying on food aid grows by the day. A few miles from Gaza City, Carney Crossing (ph), Gaza's lifeline, is closed and deserted. At the health ministry in Gaza, the new Hamas minister, refusing to heed to pressure, accusing the international community of hypocrisy.

BASIM NAYEEM, PALESTINIAN MINISTER OF HEALTH: People are dying and they don't wait. I think it is not ethical what is going on nowadays, and I think we should immediately separate at least the health file from the other files. GILMORE: Back at the hospital, the que for drugs at the dispenser is growing longer, but to no avail. Each time, the answer is the same. "Mapish" (ph) -- nothing.

Mohammed (ph) is angry. He came to get drugs for his son, who is suffering from cystic fibrosis. He takes us to his home in this sprawling Jabalia (ph) refugee camp, close to the area where Palestinians and Israelis have been trading rocket and shell fire. His son has to take eight types of drugs to survive, but their stock to now gone.

It's a terrible time to get sick in Gaza. These vulnerable people are hostages to a political standoff between the international community and Hamas. Their best hope is that the two sides start talking soon.



It puts it in perspective.

 

[NoExcuses]

Great article, Christian. Thank you for posting.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Amy, I honestly think you're a wealth of information when it comes to drugs. Unfortunately, however, it's <b>not</b> just a matter of "medicaid, medicare, RX programs". It is honestly not nearly as easy to get aid as you think it is. There truelly are a huge amount of people in the US who <i><b>cannot, through any fault, effort, or means of their own,</b></i> get coverage. And, then there are lots of us who work for smaller employers (I might add, smaller employers, combined, employ many more people than all of the large corps combined). Smaller employers don't have leveraging power and typically have worse coverage. We make a decent wage, have a decent home, but live well below our means in order to spend tens of thousands a year on medical coverage, copays, and coinsurance. We make too much to get aid but not enough to be comfortably afford the amount we have to spend. And, yes, we do make the tough choice and just do without decent cars, vacations, etc. It's just not as easy as you make it sound. Sorry for the little rant, I just think it needed saying.</end quote></div>


About living modestly. Absolutely. This is how I grew up cuz my parents had to pay for my drugs as well. My father worked weekends and never went on vacation. For 20 years. But that's life and the price he paid for being self-employed.

But it was a choice to be self-employed. And it's a choice to work for a small company who doesn't have insurance.

And if you're strugling (truely struggling - like I can't buy food because I have to pay for my drugs. NOT I can't go on vacation or get a new car cuz I have to pay for my drugs) there is help out there. No question about it.

Other than that, I think the US has gotten to a rediculous point. People won't pay for $30 for a med, but will plop down $200 for photofacial laser treatment. People won't pay $300 for private insurance if they're self-employed or work for a small biz company (and I'm not saying this is you, Anon), but they'll go on $1000s of vacation, buy $4 Starbucks EVERY DAY, or use a cell phone that costs $100/month.

I see it 1st hand all the time in the doctors' offices I'm in. Lots of my primary doctors and turning to cosmetic procedures because their patients complain about a $10 copay to see the doc but will gladly pay $100 for botox (and this isn't a rich area. it's filled with patients on Medicaid and lower-middle class people).

I think we in this country have our priorities way out of whack.

 

[anonymous]

Amy, actually it's not so easy to find a job for a large corp. Depends on your major. Then, of course, there's saving for college for 3 kids, etc. And, for us, it's not a choice of a <b>new</b> or used car, it's a car with 150,000 miles, NO heat, NO A/C in an area where the temps reach 100+ during the summer and dip down in the teens during the winter. And, NO, we aren't spending $4 for starbucks or $200 for a photofacial. I <b>totally agree</b> that there are a lot of people with the mentality that you're describing. Problem is, most of us, in the trenches, struggling to survive do not have that mentality and are not spending frivolously. The small company I work for does have insurance but coverage everywhere, even in the large companies has been drastically reduced in the 20 years I've been in the work force. Give it another 10 years and even the large company you work for probably won't have decent coverage.

That said, I agree totally with you that other countries that get their meds from <b>our R&D</b> should have to pay for it, <b>we do</b>! Our government is not looking out for our best interests. And, no, I do not want government sponsored medical coverage. I think our system could work fine if our government would just stop this silly idea of <b>free trade</b> that's fast turning our country into a feudalistic society with all of us at the bottom - serfs.
Just my opinion.

 

[NoExcuses]

oooo careful there on the free trade. that's what sent us into the great depression.....

 

[anonymous]

My problem with the free trade is with those countries that do not reciprocate.