Spendy drugs

[kgtest]

Exploratory Chemo treatments, and the drugs associated with managing that care. I think my sis who is now on Hospice was spending 100k on some of them, well the Insurance was.

 

[DireWolf]

One of things I can do when the time comes if the money is a big concern is sign for a drug trial. My drugs would be payed for by the trial that way. I’d only sign up for a late stage trial of something already showing promise in earlier trials, and I’d either be in the arm with that new drug (or new combo, or new dose, etc.) or in the control arm which has the current standard of card drug that I would have had to pay for.

 

[youbet]

This is my drug plan under my Advantage policy. Disclaimer: This is an employer-provided (State Retirement System) plan. I have no idea how this may vary from plans available to the general public). Also, I have no donut hole.

The lack of the "donut hole" provision sometimes makes me a bit envious of DW's MA plan (also from a public sector employer). With my traditional Medicare Part D plan, I spend a lot of time (and dollars) in the gap every year.

Pros and cons to everything I guess.

 

[Deej]

And this is exactly what is wrong with the healthcare system and Pharmacuetical companies in this country. GREED! Greed all around!

 

[harllee]

One of the problems with very expensive drugs like Humira is that there is no generic version on the market. In the case of Humira (which by the way is the world's highest grossing drug), there have been several generic versions developed and actually approved by the FDA but the maker of Humira has been able to prevent the marketing of the generics so far by patent lawsuits and settlements. It is just GREED. But I must admit that Humira has been a miracle drug for my husband. Before Humira he was in pain all the time and really could not live a normal life. Shortly after he started Humira he was pretty much pain free and was able to play walk, play golf, dance, etc.

 

[Koolau]

And this is exactly what is wrong with the healthcare system and Pharmacuetical companies in this country. GREED! Greed all around!

Yes, but do you own their stock?

 

[RetiredHappy]

The lack of the "donut hole" provision sometimes makes me a bit envious of DW's MA plan (also from a public sector employer). With my traditional Medicare Part D plan, I spend a lot of time (and dollars) in the gap every year.

Pros and cons to everything I guess.

Commercial MA plans all have donut holes, similar to traditional Part D plan. My husband is on a very expensive drug which we get hit with the donut hole by Q3 each year.

 

[Koolau]

Commercial MA plans all have donut holes, similar to traditional Part D plan. My husband is on a very expensive drug which we get hit with the donut hole by Q3 each year.

My doc finally took me off my one expensive med. Otherwise it was donut-hole by 3rd quarter. At least I was covered while DW found herself relegated to a formulary which didn't cover her "expensive" med at all (now also off that med, thank goodness.) YMMV

 

[caninelover]

I wonder if in some cases (assuming social security retirement benefits have not started) people can claim social security disability benefits to offset their costs, i.e. the disability is preventing them from working? I have no idea if it's possible but just wondering.

 

[Montecfo]

Harllee,

Glad you are gettng that assistance.

Monte

 

[Montecfo]

Yes, but do you own their stock?

I sure do. It's the best way to "fight back".

And these drugs are so widely held, most of us do own them.

 

[athena53]

One of things I can do when the time comes if the money is a big concern is sign for a drug trial. My drugs would be paid for by the trial that way. I’d only sign up for a late stage trial of something already showing promise in earlier trials, and I’d either be in the arm with that new drug (or new combo, or new dose, etc.) or in the control arm which has the current standard of card drug that I would have had to pay for.

A good option but they're pretty selective. When DH was diagnosed with acute myeloid leukemia the doc tried to get him into a drug trial. He was rejected because of something they didn't like in his bloodwork. They want patients who have the specific issue the new treatment addresses, but not much else. To be fair, DH was in pretty bad shape- they told us chemo had a 3% chance of success. He chose palliative care instead.

 

[DireWolf]

I wonder if in some cases (assuming social security retirement benefits have not started) people can claim social security disability benefits to offset their costs, i.e. the disability is preventing them from working? I have no idea if it's possible but just wondering.

Disability will automatically convert to the regular SS benefit at FRA. It will, at least, give you more SS money earlier. For most, it’s a long, difficult process to get approval.

One thing worth pointing out for early retirees, disability will force the recipient onto Medicare after 2 years. At first glance, that sounds good, right? But because the person is not 65+, they are treated differently as far as supplement plans go. All disability persons are put in the same risk group, so premiums are usually much, much higher. It can end up being much more expensive than a good (subsidized) ACA plan, especially once the drug costs factor in. Because you’re eligible for Medicare, you can’t just turn down Medicare and get a subsidized ACA plan. Advantage plans don’t treat the disabled as a separate group, so it ends up being a much cheaper route. But then you might lose the flexibility of seeing a specialist in another state, for instance.

 

[caninelover]

Disability will automatically convert to the regular SS benefit at FRA. It will, at least, give you more SS money earlier. For most, it’s a long, difficult process to get approval.



One thing worth pointing out for early retirees, disability will force the recipient onto Medicare after 2 years. At first glance, that sounds good, right? But because the person is not 65+, they are treated differently as far as supplement plans go. All disability persons are put in the same risk group, so premiums are usually much, much higher. It can end up being much more expensive than a good (subsidized) ACA plan, especially once the drug costs factor in. Because you’re eligible for Medicare, you can’t just turn down Medicare and get a subsidized ACA plan. Advantage plans don’t treat the disabled as a separate group, so it ends up being a much cheaper route. But then you might lose the flexibility of seeing a specialist in another state, for instance.

Thanks DireWolf, this response was very helpful.

 

[Koolau]

I sure do. It's the best way to "fight back".

And these drugs are so widely held, most of us do own them.

I agree. Any time a company has enough clout to name their own price on products (some have called them miracles - who wouldn't pay top dollar for a miracle?) why wouldn't we buy these "evil" pharmaceutical - or even "evil" oil company's stocks?

 

[GaryInCO]

My doc finally took me off my one expensive med. Otherwise it was donut-hole by 3rd quarter.

I'll trade with you! I'll blow completely through the donut-hole in JANUARY.

 

[imnontrad]

Different companies cover different drugs for Medicare Part D. Consider calling "Boomer Benefits" (have your drug list handy) to see if there is another plan that will cover more.

 

[isisdave]

Part D policies vary a lot in price and coverage. I just got the "changes for 2022" on my Aetna bare-bones plan, and the price is going down from $7.30 to 6.80 per month. Its benefits aren't great, but all our meds are non-spendy. Usually free, in fact.

It's hard to do the research. You have to start at the Medicare plan list for your county, check the price, check the benefits, and see if your drug is on their list at all.

The penalty for not signing up promptly is 1% per non-signed-up month on the price of the plan you finally DO sign up for. If you wait 4 years, that'll be a 48% penalty, but what will be the price of the plan you want or need then?

Every state has an office to help you pick Medicare plans. It's called SHIP. Start at https://www.seniorsresourceguide.com/directories/National/SHIP/

Also, don't forget to check out programs like AARP's Optum plan, GoodRX, etc. Look for lists like at https://www.verywellhealth.com/best-prescription-discount-cards-4801786 -- Our only semi-spendy Rx is raloxifene, and the copay has rocketed around from $25 to $165 for 90 days this last year. GoodRx got us a coupon for Costco for $29. There's no understanding this industry, so don't try.

 

[Ebendana]

Functionally uninsured

I have been a Pharma rep for 35 years, with a major company that makes very expensive drugs for cancer...a couple of things...when looking at if you qualify for "patient assistance" you can make up to 400-500% of Federal Poverty limit and have assets that are worth millions, but if your "outgo" exceeds you "income" you can get an exception..have your doctor reach out to the local drug rep. All companies at the end of the day have real people that make these decisions...so for example, let's say your fixed income is 5K per month and your fixed expenses are $3,500, only leaving you $1,500 per month in discretionary income...the drug companies can give you a pricing break so you only pay a fraction of the cost, like $100 per month..I have seen these exceptions made many times. Your Doctor will have to do some "work", write a letter of medical necessity, say it is a matter of life and death, and you will have to be willing to share your financial records regarding income/expenses, but it can be done.

 

[Retired Expat]

you might look to see if they are sold outside the US? I buy many of my prescription drugs in Uruguay. No prescription required and they cost less than the co-pay I had in the US. Works well if pills or things that don’t require refrigeration

My insulin is much cheaper here just a pain to transport!

 

[Old Microbiologist]

First, I am very sorry to hear about your medical condition. It is a tragedy and horrible to deal with.

My father had non-Hodgkins lymphoma but died from the chemo used to treat him as it destroyed his bone marrow and as he was 76 years old, Medicare wouldn't pay for a bone marrow transplant or even transfusions after 90 days. So, in his case, the treatment (cisplatin) was his cause of death and caused aplastic anemia.

My ex-mother-in-law also died from non-Hodgkins lymphoma with aggressive treatment 2 years ago. They had the Kaiser full plan as my ex-father-in-law was a retired professor in California. Then I was diagnosed way back as having monoclonal gammopathy which is a precursor to multiple myeloma which bummed me out for a while until I realized it progresses from MSG to MM at a statistical rate of 1% a year. The bummer is there is no effective treatment for MM and the survival rate is 0% at 5 years. I shrug it off and don't even check the blood/urine numbers anymore. What will be will be.

So not to be sounding too callous but you must look hard at your realistic probability of survival and from that base your decisions. You didn't state what your disease is so it is impossible to predict. But, as in my case, if it is something with a less than 1% probability of survival then you need to look at palliative care and not cures.

I have done a lot of work on cancer patients over my career so am well versed in outcomes from various treatments and it is well documented that a positive mental attitude and strong mental fortitude coupled with prayer can often be far better than normal treatments. Spontaneous remission rates for prayer (or deep meditation) are actually higher than chemotherapy even after all these years. I am not a believer in divine intervention, although I believe it is possible; however, I do believe we can focus our minds to deal with serious diseases. Prayer is a tool to focus the mind. Meditation is another and both work similarly.

Part of my PhD dissertation dealt with the coupling of the immune and nervous systems. I was working at a cellular level with T-cell lymphocytes and it is well established now that the nervous system has control over the immune system. This is why depression leads to illness. Penile erections are caused by macrophages secreting nitric oxide. There is a long list of connections and erectile dysfunction is linked to chronic inflammation is just one of them and is a good example of the complexity of our systems. So, I am a firm believer that the brain can treat the body directly. How to do that is the larger question. I meditate daily as part of my yoga routine and I do focused concentration on my organs. There is an entire school about this with amazing results (originating in Russia from an Uzbek) called the Norbekov system and as hyped as it is, they do get some amazing results. Normally I would poo-poo something like this but I have seen the results (my wife) and it works IF you are dedicated and put in the time and keep a positive attitude. https://norbekovsystem.com/en/

A stress-free environment and happy life do a lot more than aggressive therapy and miserable existence. You have to make those choices as to what your situation is and how you want to handle it. Personally, I will never take drugs that are ridiculously expensive. In my career, I developed many monoclonal antibodies to generate diagnostic tests for substances that up to that point were impossible to measure. It isn't all that hard to do and pharmaceutical companies charging ridiculous prices for this is a symptom of the sickness of our society. Again, it is the boiling frog problem in western societies. Somehow we became conditioned that prices like this are "normal". Most don't really work well anyway but do buy you some time, but the end game remains the same. My next-door neighbor died 3 months ago from breast cancer and her billionaire son paid for her $30k a month chemo (she was Swiss and her health care insurance didn't pay for it at all) but her outcome remained the same and she died 12 months after diagnosis. But, my brother's first wife had breast cancer and was a devout catholic and an extremely strong-willed person who simply refused to die. She lasted 5 years past when they said she would die.

My wife's cousin has had so many cancers it is ridiculous and he had pancreatic cancer. They removed his spleen, half his liver, and his pancreas plus one lung. He has been living 5 years now with no spleen (supposedly impossible) solely due to his attitude towards life. He is on insulin etc. but no chemotherapy. I can go on but I think i have made my point.

 

[GaryInCO]

@Ebendana, now that I've officially gone on Medicare, my doctor's office is looking into options. Hopefully they will find something, but I think I have the good-problem-to-have of making too much $$ to qualify. Not by much, unfortunately, and the 5% co-insurance knocks a pretty big hole in what I earn, but I think I'm going to be stuck with the payment unless we can convince the pharma co to cut me a break.

First, I am very sorry to hear about your medical condition. It is a tragedy and horrible to deal with.
My father had non-Hodgkins lymphoma but died from the chemo used to treat him

@Old Microbiologist, I sympathize. My dad died of the exact same "rare" form I have -- Mantle-Cell lymphoma -- and while I don't think the chemo actually killed him, it killed his quality of life. His final chemo was CHOP, and it was brutal. After a while on that stuff he said "No more. If this is what it takes to keep me alive, I'd rather die."

Then I was diagnosed way back as having monoclonal gammopathy which is a precursor to multiple myeloma which bummed me out for a while until I realized it progresses from MSG to MM at a statistical rate of 1% a year. The bummer is there is no effective treatment for MM and the survival rate is 0% at 5 years.

Are you sure? Maybe your form is different, but I have a good friend from college who has been living with MM for 11 years now, and he's still going strong. He did an autologous marrow transplant in 2014, and I think he's on Revlimid.

So not to be sounding too callous but you must look hard at your realistic probability of survival and from that base your decisions.

I did that, looking at the Mayo site, MDAnderson, Johns Hopkins, etc. Their projections were pretty dire, like 3-5 yr survival, and based on my dad's experience it wouldn't be 3-5 fun years. I freaked out.

But then I met with my oncologist, and he said "No no, that's outdated information. We have much better options now." He told me we'd be shooting to put it into remission, and so far (after about 9 months on treatment), it's working like a charm. My drugs are Ibrutinib/imbruvica (made all signs of the MCL vanish in 2 weeks, zero side effects) and Venetoclax/venclexta (minor muscle aches). The studies I've read say that patients ALWAYS relapse on Ibrutinib, and then your options are "dismal" -- no effective treatment, 6 month median survival. But the one-two punch of both drugs is more effective. The main study they did on it ended 4 years ago, and so far basically everybody is still doing great. So doc says he'll guarantee me 4-5 years, and before that runs out, there are already better drugs in clinical trials. He claims I'll die of old age. (Assuming I don't catch Covid, of course -- it hits blood cancers extra hard. 60s-age men with lymphoma have a 50-60% Covid fatality rate, ouch.)

Part of my PhD dissertation dealt with the coupling of the immune and nervous systems. I was working at a cellular level with T-cell lymphocytes and it is well established now that the nervous system has control over the immune system. This is why depression leads to illness. Penile erections are caused by macrophages secreting nitric oxide. There is a long list of connections and erectile dysfunction is linked to chronic inflammation is just one of them and is a good example of the complexity of our systems.

Interesting. Ex-DW dumped me 10 years ago, and things weren't working great even before that, but with the marriage falling apart anyway I didn't stress over it. I have unfortunately been mostly single and celibate since then, so I haven't missed it that much. But I would love to get into another committed relationship, and it would be nice if everything worked. If that's just a secondary symptom of other problems, I should look deeper into it. If you have any recommended treatments, I'd love to hear 'em.

I agree the mind has strong influence on the body. I don't meditate, but I have a pretty positive mental outlook. I would be better if I hadn't had to basically quarantine myself for the last 18 months. I really miss social events, hugs and other physical contact, etc. But I'll look at Norbekov.

A stress-free environment and happy life do a lot more than aggressive therapy and miserable existence. You have to make those choices as to what your situation is and how you want to handle it. Personally, I will never take drugs that are ridiculously expensive.

I'm not a fan of ridiculously expensive. But these drugs are life-savers, so far at least. Without them I would already be starting the downhill slide, and my QOL would be pretty bad. As it is, I feel great, almost zero side effects (except $$$!), riding my bike and going hiking, etc. I'd be living a normal life, traveling, etc if it wasn't for Covid. These drugs have basically stopped the cancer cold. That's worth a lot. Especially if somebody else pays for (most of) it.

I do a lot of nutritional things to help my body fight off the cancer -- based on Jane McLelland's book (How to Starve Cancer), Joe Tippens' protocol, I've even taken huge quantities of THC (which is proven to kill cancer cells). I've improved my diet (e.g. got rid of most sugars, reduced alcohol intake) and I'm exercising more consistently than I ever have in my life. I'm doing what I can to make it difficult for the cancer. And I live in a beautiful lakefront house, so just looking out the window is balm to my soul.

 

[Sunset]

Part D policies vary a lot in price and coverage.......

It's hard to do the research. You have to start at the Medicare plan list for your county, check the price, check the benefits, and see if your drug is on their list at all.

......

I find the medicare.gov site to be fantastic for picking Part D policies.
I type in the drugs used, the pharmacies desired, and it tells me the cost of a years worth of drugs using various plans and pharmacies.

Yearly I assist some much older and not computer savvy folks to check and possibly switch their part D.

 

[Sunset]

P.....

.... Our only semi-spendy Rx is raloxifene, and the copay has rocketed around from $25 to $165 for 90 days this last year. GoodRx got us a coupon for Costco for $29. There's no understanding this industry, so don't try.

This is interesting, as our Costco refused to use a GoodRx coupon. Costco claimed that since we had drug insurance that was the only way they could process the prescription.

I'm thinking the pharmacist lied to me.

We switched our prescriptions to Walmart

 

[Old Microbiologist]

GaryInCo - That is some good news for you and as always things keep changing and treatments changing as well. It is a full-time job just to keep up with the clinical trials and treatments. To be honest I stopped looking into MM treatments after we retired and left the US. The military (Walter Reed) was monitoring my antibody levels and they were fairly constant so I just stopped looking at it. There is some likelihood the military caused my monoclonal gammopathy as I was part of a group of scientists required to take 21 experimental vaccines to work at in the biocontainment suites at USAMRIID. After I retired there was a small study looking at the long-term effects of multiple vaccinations on military members and this was where they discovered my monoclonal gammopathy.

Here in Hungary, it would be problematic to try and get that measured again. I am sure I can find someone willing to do it but here medicine is practiced differently. As a person ages, it is sort of expected for you to go off and die and treatment options wanes with age. Maybe it is callous but this is the way it is here. It is improving but in general, they move towards palliative treatment rather than try and cure serious illnesses in older patients. We have applied for the national health system and that is slowly percolating and would offer a way to get expanded care and not have to pay cash. Mostly, I want it just to be in the system as not being in the national medical database you can't get COVID vaccinations officially. Should we succeed in getting enrolled, which is in no way guaranteed for permanent residents, then I may pursue it again. That opens up a lot of options for treatment. I would still probably pay cash to get faster treatment but at least we would have access to the appointment system and referrals. The cost would be 9000 HUF per month per person (so 18,000 HUF) which comes to $60 a month for full coverage for both of us.

We have a new National Oncological Center in nearby Veszprem (15km away) and I know the pathologist working there fairly well. They were very kind with my last bout of melanoma and 6 basal cell carcinoma lesions on my arms 2 years ago. All went well and the cost (we pay cash for everything) was somewhere around $250 for the minor surgeries. It had to be done twice as the surgeon failed to get large enough margins and histopathology. It has probably doubled in price since Hungary amended fees for physicians more than doubling their salaries to remain competitive with the rest of the EU. But, the plus is you are no longer expected to "tip" doctors here and in fact is has been made illegal. The tipping was always estimated to be double the fee so in a sense we are saving money now. I usually don't have to tip as being a semi-famous doctor myself I get treatment as a professional courtesy. As I am getting older this is happening less often. No big deal though as we can afford pretty much anything out of pocket. We are very happy with our medical coverage here but there are some issues when you need expanded care. Figuring out who is doing what where is the largest issue. The costs are fairly trivial in comparison to the US. But, paying for some very expensive treatments might be an issue. They more than likely would not be on the formulary for pharmacies here so completely out of pocket. The EU has a set list of pharmaceuticals with controlled prices but it is fairly limited. There are also quite a few drugs here that are not available in the US for various political reasons. Most are made here as Hungary has a large and robust pharmaceutical industry as does Croatia next door. So, I have to figure out what is available and where to find stuff if it isn't. It is weird here that they don't use painkillers much at all. The 'big" one is paracetamol which they consider heavy. No NSAIDS other than that. Opioids are non-existent. It is a completely different mind set than in the US.