TyrannoSooze eats Pharmehceutical Companies.... (Mama Bear isn't happy.)

@capguncowboy Believe me, I understand exactly why you are saying. I feel the same way much of the time. It just pains me so much to think of all the lives that are in the balance when it comes to stuff like this.

It’s not like my kid can just NOT take her insulin. She’ll die! That thought is always with me. Day and night. Putting a price on her life (or anyone’s) is wrong on so many ethical and moral reasons.

@capguncowboy It’s unfortunate how much medicine costs (especially in the US), but keep in mind research is expensive too. Cures aren’t found by companies- they’re found by large groups of individuals working for those companies. Do you honestly believe that 100% of scientists in medical research would keep their mouth shut if a cure for diabetes had been found?

@capguncowboy If a cure is found for a disease, pharmaceutical companies will race to be the first to get it to market. They would compete to make the most money off of the cure (i.e. Gilead and Harvoni), but the last thing they would do is keep it a secret.

@zachdecker Are you suggesting that Harvoni actually cures a virus (Hep C) based on the ad campaign being run by Gilead?

I have a bit of experience with Hep C and the bull surrounding treatment. The relapse rate on Harvoni is probably impossible to find but my neighbor relapsed as well as a huge number of reports of individuals on the biggest HepC forum in the world. It will take a few more years for these poor souls to fully develop their disabling sides but I am sure they will come with a vengeance!

I have hope that we see cures for diseases of all kinds but I don’t think this will happen under the current business environments of Big Pharma and the FDA.

p.s. The correct terminology after successful treatment of Hep C is “Undetectable” and not a cure.

@fjp999 To my knowledge I have never seen a Gilead advertisement. -We rarely watch any live television with ads in my home.

No, I am not suggesting that any virus is cured. The vast majority of HCV patients are cured of their infection by completing a treatment prescribed by their doctor (Harvoni or otherwise). Calling these patients cured once they reach a SVR24 endpoint is absolutely correct. The FDA, EMA, PMDA, etc calls them cured, as do competing drug companies, research scientists, etc
You are free to disagree with this if you choose. People are free to disagree with climate change if they choose, despite the evidence that experts on the subject provide to them.

You think relapse rates for Harvoni are impossible to find, but you seem to neglect the fact that competitors to Gilead are spending fortunes on the drug and running their own clinical trials to demonstrate better results over the long term. These same companies spend more still to attend medical congresses and disseminate this information and make it public.
Cure rates for 12 and 24 weeks post treatment are part of the inserts for all of these drugs. These rates are not made up or marketing material–they are supported by statistics.

I too have a bit of experience on this subject. While I concede that I don’t have any neighbors with HCV (at least none that I know of) and I have not spent time reading about this on internet forums, I have spent over 15 years working full time in pharmaceutical R&D with data on clinical trials. Only a couple of years of that time has been focused primarily on developing treatments for HCV though, so I will certainly consider your positions.

@f00l Our insurance covers all the prescriptions, unless they aren’t on the Preferred Drug List (PDL) or we’ve reached the maximum allowed for whatever time frame. After that I have to pay out of pocket.

I haven’t found any state funded programs that are on a long-term basis out in my area. Most are for temporary assistance due to unforeseen events. For example, natural disasters, job loss, etc.

So, I hunt stuff down when it’s on sale, use coupons, and send in any and all rebates that I can. I was able to get a free meter and strips last month - yay! Since school’s back in session, and I’m the type of mom that prepares for everything, there’s a kit in the nurse’s office, the classroom, gym, music, computers, and on the buses.

It gets expensive, but I find a way. Sadly, with costs continuing to rise, one wonders how long they will be able to get the medications and supplies they need.

Insurance just isn’t that reliable anymore… we just received a letter that our doctors were “leaving the network” and told that we had to find all new doctors or change insurance. Since I’m not willing to give up her endocrinologist (diabetes doc), I changed our insurance.

@f00l even if insurance is covering the hike - that’s going to raise premiums. These price hikes are a drain on the system and it all comes out of the consumer’s pocket in the end.

@Thumperchick At the end of the day… I really wish that medications that are a deciding factor as to whether or not someone lives or dies are easily accessible, affordable, and available in unlimited supply.

No one should be allowed to tell us that Kali doesn’t need to check her sugar 6-8 times a day. No one has the right to say that she can’t have a third vial of insulin because one accidentally broke.

The more I think about it, the more upset I get. It all sucks. Argh! shakes fist

@MzSooze I absolutely agree. The greed and insanity in our healthcare system is murderous.

@Thumperchick

/giphy preach it

@Thumperchick Insanity, I agree. Greed, not so sure. The summer before I went to college I had a job as a lab technician. We were working on synthetic insulin. At the time it was made from pig pancreas. Two tons of pig parts for 8 ounces of insulin. Synthetic insulin is a reality now, as are all those other wonder drugs. Who do you think paid for that research? Not the fucking Canadians or the US government. You want your drugs safe? The testing alone costs fortunes. And that medication that saved your life had a side effect you didn’t like? Sue the drug company. Have a stroke from your birth control pills because you fucking smoke packs a day and didn’t read the package insert? Sue the drug company. And they also paid for development of all those failed drugs. If you want new drugs someone has to foot the bill and for the most part it’s insurance companies.

@sammydog01
To my thinking, yes, they spend tons of $ on R&D, but also yes, in the US, the profiteer like pirates (sometimes exactly like pirates) because no regulation and because life and death, captive consumer audience, etc.

A breaking point is coming. Big pharma is often insanely profitable, and at some point the campaign $ they spend will not longer be enough to buy out Congress.

@sammydog01 @f00l The reason given for insulin price spikes is that there is no generic option available. Does that sound reasonable? I guess having to deal with the repercussions of too little and too much it just rubs me the wrong way. I, being uneducated in the ways of the labs that create our wonder drugs, would imagine that synthetic insulin is about as close to generic as one can get.

Also, that’s a lot of pig for a tiny amount of insulin. Holy crap!! Nonetheless, sounds like a very interesting job and you helped improve people’s lives!!

@MzSooze
I think most patented prescription drugs get 20-25 years of patent protection, depending on various factors. And after a drug patent expires, generics are not immediately available. They have to also go thru some sort of testing and approval.

So…years and decades. My knowledge is strictly hearsay, someone wise pls speak up if you wish to.

My sympathies. I would really investigate Canada, in your situation. I would also investigate the possibility of contacting the pharmaceutical company to ask for free or reduced cost access to whatever is needed. (Contacting the pharma corp about this is a “process” - don’t just jump in, read up on procedures and other persons’ experiences with this. You must enlist the endocrinologist or other medical people in this if you want to get anywhere.)

If you know or can find a social worker who is experienced in medical issues and/or children’s issues, that person will be an incredible source of info. If you don’t know a social worker, try calling your local pediatric hospital or your local diabetes or other charitable medical or kids organization for help to find one.

Also try contacting United Way about this. They are connected to all sorts of local resources hardly anyone knows about. Also try contacting the local Catholic Charities - they are amazing, offer all sorts of help. They don’t care what religion you profess to, or whether you have a religion or not, they don’t care, will never ask, they simply intend to help.

@f00l The processes are time-consuming and sometimes aggravating, but it’s worth it. I have petitioned, lobbied, advocated, and goodness knows what else to help create a better life for my child. I will continue to do so.

Thank you for all the information and suggestions!!! I truly do appreciate it.

@MzSooze There are no generic options for insulin because the stuff you use is new enough to be on patent, and the pig insulin sucked. I worked with a guy with type 1 born around 1970. He was going blind at age 30. The quality of life your daughter will have is totally different because of the new drugs. I get the issue with price, I really do- my insurance screws me over because of my son’s birth defect, but maybe step back and look at the bigger picture. I do when those bills roll in.

@sammydog01 good point. I am grateful for the drugs we have access too. Also for the fact that I haven’t had to pay an astronomical amount of money out of pocket. Just a growing concern for her future. A cure to all ailments, not just t1d, would be so nice.

Hope things are going well for you and your son, and thank you for reminding me to look at the bigger picture. It’s easy to forget that sometimes.

@sammydog01
It can be hard to step back and look at the bigger picture when, like so many people, one is forced to choose between prescriptions or other medical costs and, say, rent or mortgage payments. Or health insurance payments. Been there.

I notice that pharma companies somehow manage to sell their products in countries that regulate pricing. And if the US started regulating pricing, I am betting the those products would still be developed and sold, and that plenty of businesses would be productive and profitable in this area.

I am oversimplifying here, and am aware any “solution” would have its complexities.

@f00l Yep, the US bears the burden for R&D. That sucks and is totally unfair. Maybe other developed nations need to pay more. Looking at you, Canada.

@sammydog01 @f00l

@somf69 I never thought to look at Canada for our prescriptions… couldn’t hurt to check it out.

@MzSooze I have cousins who are diabetic, and I know they use Canadian pharmacies. I’ll ask which ones. I did a quick check for Humalog, and the price for two (5 x 3 ml pk) is $216. USD. https://www.canadianinsulin.com/humalog-mix50-kwik-pen/

@OldCatLady Oh my gosh! They have the Humalog Kali uses for $55 USD!!! That is less than a quarter of the sticker price at our pharmacy!

@MzSooze
I have never used an out-of-US pharmacy resources except when traveling. No special knowledge. However, have heard: there are many “Canadian pharmacies” that aren’t even .00001% Canadian. Proceed w caution. Please make sure your Canadian pharmacy has a real address in Canada, and operates there, primarily for Canadians, instead of just faking it from somewhere in Asia. Might make sense to visit and find a good one in person, then use that one. I dunno.

@f00l @mrsnooze If you order online definitely double check everything. We ordered from a website, Canadian pharmacy something. The package came from India with some “enhancement” samples. It was not that much cheaper so we went back to local options.

@MzSooze
For some reason I think you are in Chicago. Is driving to CA possible for you?

@f00l Close enough that it counts. Yes, driving! Hadn’t even considered that, guess I can put that new Passport to some good use. (You did mean Canada right?)

@MzSooze
I would consider Mexican options to be a very distance second choice, if going abroad. Yes, Canada.

But also United Way, etc. And a social worker or three.

Hope your kid is looking at medical areas as career options. She’ll know more and get better access to care that way, and she might make some sort of huge difference to others as well.

@f00l she sure is. She wanted to be a nurse at a children’s hospital, and then she said she wanted to be an endocrinologist. Whatever the case, she’s focused on a medical profession of some sort.

@MzSooze
If she becomes a nurse, I hope she aims for “nurse practitioner”. Or she could look at “physician’s assistant”; possibly a better career path.