Drug Accessibility Issues
There are many different reasons why someone may have issues with drug access.
Some drugs aren't approved in certain countries, or involve lots of red tape to access.
Some are too expensive, especially orphan drugs.
"The war on drugs" sometimes makes it difficult for those to access legitimate treatment.
Doctor's ignorance can be a factor.
Some aren't approved for home use/doctors won't give home use access, so traveling can be a big hurdle.
Do you have any trouble getting access to drugs that you need? How has this affected you? Have you found ways to lessen the impact?
@AffyAvo
I'll second doctor ignorance - so many aren't willing to do things outside of what is in the book. I used to have to fight with docs who wanted to write the script for X, and I'd be like "No, that one doesn't work - go back a generation and that works best for this". Be willing to go to bat for yourself and be willing to research meds and be in the know about them. The drug reps still come to the office and offer stuff to the practice - so ask for samples and ask about coupons. Doctors are given coupons to help incentivize their patience to purchase the drug -- but ask, do you really need it? Is this one really good for me with all my x, y, and z? Don't just take a script to take a script -- be in the know, know before you go, and be aware of what you are taking.
I'll also say, the insurance industry in the US has a hand in the access problem as well -- what they'll cover, won't cover, and the order of treatment standard - you must do A before you try B and so forth. The kind of generic class they'll pay for - and not all generics are equal.
Expense -- is ridiculous on some drugs - I mean look at EPI-pens and what happened there. Then look at PharmaBros - how he did like 4000% increase on life saving drugs??
Some pharmacuticals do offer offset programs -- I've helped friends find them and found them for myself. I helped an elderly friend who was looking at in increase to 600US for her heart med -- contacted the company, helped her fill the forms in and got that scrip for $90 a month. It's still a lot on her budget -- but at least most would be covered now.
Some pharmacies are now subsidizing common meds - like Walmart, Walgreens, Publix, CVS (that I know of) to provide low cost or free like free antibiotics, or reduced heart, thyroid or diabetes meds or they have real good prices on scripts written for 90-days or 120-days. It's getting the docs to write the scrips for the period that can be hard - because your insurance may limit to 30 day rounds -- but in reality, switching to the 120-day may be cheaper than each of our 30 day co-pays. (Worked out that way for me one on script)
The real shame is ... if the pharma company can't make money off it on a long term basis - they aren't going to pay for research and development. They aren't in it for the cure... cures don't pay stockholders. With recent changes in patent law -- change one thing in the ingredients list and they can prolong the release period for the creation of generics. You change a molecule - repatent it - voila, no new generic. No reduced cost product - because it's new! Improved!
Some of the most recent medication study breakthroughs are coming out of Europe -- why? I think it is because the national healthcare is footing the bill and they want to see the cure. They want to get rid of the illness to alleviate the financial burden. With that motivation, things will improve around the world for us all.
doctors think we just want drugs, being seen as a drug dealer or something.
I never wanted or asked for drugs, but right away, when i start to talk about my issues, then they pretend that i want drugs, and refuse to check what is going.
I dont want drugs, i want know what i have
For me, I didn't have any appropriate medications for my most serious illness for years because I was undiagnosed. After knowing what I had, it took months to be officially diagnosed, and then a month after that to have training set up which is when I recieved my meds.
Administering them at home at the time was not easy, (self-IV starts were the issue) so I had many more ER trips than compared to now. At the ER there were many issues in convincing doctors to give me my meds, especially crucial when my throat was swelling, and the issue was all ignorance. They are unfamiliar and don't want to give it.
Now I have 2 more drugs. I still have issues if in the hospital - both admitted or emergency room. One took a while as I didn't pass the criteria for a clinical trial, but got access via off-label use about a year later. All 3 are very expensive, but 2 are blood products so the government takes care of that. The 3rd is via private insurance unless I'm in the hospital when using it, so every job change of my husband's is an issue and there have been many company changes. Currently, I get 12 doses covered/year and that's not full coverage either, so I'm paying $100s/dose out of pocket for those first 12 doses (which is better than the $1000s/dose that it does cost). That 3rd one is really good for attacks due to how much faster it can be administered. It used to only be accessible through a Special Access Program which would have been totally useless in an emergency in the hospital. Now that it's at least fully approved, there's cost, ignorance, plus an email that went through our health care system stigmatizing it that can all create problems. This drug is non-addictive, safe. I think the email went through the health care system due to the cost and it basically said it's not all the useful for a certain type of HAE which is very questionable and is still worth trying when someone is having a life-threatening attack. It's not even the type of HAE that I have, but it scared doctors off unfamilar with it even more :(
I've had access problems with other drugs too, for less serious issues. Two that worked well for me are simply unavailable now, they are not being made. Sometimes there's a shortage of drugs that I use. Sometimes I have trouble getting a doctor to write a prescription, this was especially a problem when I was a student and the clinic at school was run so that you never got to pick a specific doctor. Some doctors unfamiliar with all of my health issues had some concerns about if the risk was worth it, when specialists had already made it quite clear they were for my situation, but there was no quick record access.
@AffyAvo
I'm sorry you're having so much trouble with your medication and treatment -- that's very frustrating. I had to look up HAE... as I wasn't familiar with it. That does sound like you are managing a lot - and are struggling with the "By-the-book doctors" and quite a bit of ignorance. I can't offer much support specifically to this - but I'm willing to listen and offer 2-cents of thoughts. :D
Is there a national organization where you are? I popped into the US and Canadian version - and they seem to have quite a few resources for citizens. The US one mentioned an upcoming international conference in Vienna on the matter of HAE, research and advocacy/awareness.
Do you ever ask your specialist to send summations and/or suggest information to care providers - like the hospital, school infirmary, and such? I've printed out information and taken it to my GP -- he usually hasn't seen the study or the advisory and adds it to his collective knowledge. (I like him for that... a lot.) Can your specialist make a call to the insurance on your behalf and clarify the necessity of the drugs you need? Are there omsbudman or patient advocates you can turn to help as well?
@diplomaticconfucious I'm Canadian, and am a member of HAE Canada.
The rare blood disorder clinic where my hematologist is based out of is really helpful. I have a social worker who arranges all the things with insurance plus the prescriptions with the speciality pharmacy (I can't get the medication from a pharmacy in the same province).
My condition and treatment are noted on my electronic file, there's a special flag for me at two hospitals (the flag system has to be set up on a per hospital basis) and I have an emergency room letter, plus a wallet card from HAE Canada. It doesn't change the attitude of the doctors in the emergency room though. My hematologist also goes around to all the emergency rooms doing education sessions, that helped a bit, but doctors are still very cautious with medications they don't know much about.
@AffyAvo
That's amazing support - and a wonderful doctor who is going beyond to try to break through the bureaucracy and the mindsets. Ignorance is difficult battle to wage -- and that's what he is up against, ignorance.
Kudos to you for having this all in place -- that takes a lot too.
Are there any advocacy routes to raise awareness with hospital administration? That's usually a back-channel obstacle here in the states to treatment in the ER. Cost-cutting, bed em, vet em, pill em, flip em -- preferably as quick as you can with minimal cost to the hospital - and keeping specialty meds on hand, that's not cost-cutting. (I know too many nurses and this side of the coin that's causing probs)
@diplomaticconfucious HAE Canada was going to raise awareness within hospitals, no idea what happened with that though. I feel like for not I've done what's possible. I mostly try to stay out of the hospital and self treat attacks at home.
@AffyAvo
I understand that - completely!
I don't go to the ER with gastro complications due to AI or anything actually -- thanks to a Workers' Comp doctor's note in the system. I can't get any treatment in an ER in the area actually. To get ER treatment - I'd have to leave the immediate area drive over the border into another state or drive 150 miles south in the same state before being able to access a different health system because all of the hospitals are owned by one company in my area.
Sucks -- but what can I do?
@diplomaticconfucious That's horrible!
For me, it's just that treating at home feels much safer. The earlier an attack is treated, the faster it goes away. If caught before the swelling has even happened, none will usually happen. If I wake up with an attack (so it has gone on for hours already) it can take a long time for it to go away completely. It's also more likely to rebound if treated late. Getting additional doses in hospital is especially bad, they worry about how much one can have.
I will go in if an attack feels especially bad or that it's not going away and will pop back worse. If things get really bad, they can intubate me which I obviously can't do at home! In general though I prefer to treat/retreat if needed at home.
@AffyAvo
I can see the necessity in your situation why ER visits are important -- and you do know your body best.
HAE is rapid onset, yes? Do you have triggers or pre-cursors that you track or can notice?
Like I said, I"m not familiar with it - but I'm willing to be educated.
I've worked out a response plan with the Doc for allergies and AI while I had him.... which anti-histamines to take and in what order and how often. We did add a nebulizer to the treatment plan -- not my favorite meds for the side effects but you have to be prepared. Unfortunately, I've run out of one of the maintenance meds and no longer have insurance -- so I'm trying to save up for both the doc visit and the pharmacy. :/
@diplomaticconfucious I have many triggers, they basically mostly come down to physical stress. Exercise, injuries, infections, smoke, allergies getting bad, pressure changes, etc.
My swells tend to develop much more slowly than most, so that helps. I have never gone from nothing to being concerned I might not be breathing in an hour, for others that can be very typical and for some the airway becomes compromised within 30 minutes. There's no predictability though, so it's possible that may happen to me.
Here's some related information, posted yesterday by (I think) a San Francisco psychiatrist: Mental Health on a Budget
@RarelyCharlie
Canadian pharmacies are unlicensed and illegitimate and you should never use them, according to the same people who tell you that marijuana is a gateway drug and porn will fill your computer with Russian viruses.
...
They are technically illegal
Considering this is the only way to access one of my medications, my social worker sets it up, and insurance has covered my costs well into the $1000s I'm pretty sure mail order pharmacies are legal. legitimate and licenced!
luckily i have never had any problems getting any of my medications thanks to being on my fathers insurance and it covering a lot. however he is now retiring and i have to get insurance of my own and i am so concerned over the cost of my meds. i five different pills and two insulin shots and the cost of them without coverage is unreal.
@caringShoulder14
Sorry to hear about your coverage loss -- that can be very difficult.
Check pharmacies for discount programs, check the pharmaceutical companies for discount programs, check your area for subsidized pharmacy (they exist but are hard to find) - and when shopping for coverage - ask for access to the list of drugs they cover that includes the class of generic for your consideration. Some programs will cover only generics - but you need to be able to research the different class "brands" and know how they actually perform to the name brand.
Best of luck to you and your family.