Rx costs: I have seen how much some of... - CLL Support Assoc...

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Rx costs

I have seen how much some of this medicine can cost. I am still in W&W. Does anyone know if Medicare covers it?

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Yes Medicare does if it’s approved treatment . My insurance is not Medicare and it is United and it’s 100% covered. If you have Medicare I would not worry at all. I would get a great secondary like AARP United. It is approximately $450 a month and you will probably not see any bills. Do NOT “replace” your Medicate with a Medicare advantage product. Do not let any insurance company convince you to give up your Medicare because you will decrease your choice of centers and doctors . Everybody takes Medicare.. Just get a great secondary (or supplemental) to pick up deductibles and copays for the center and doctor . And then get a great part D Medicare private insurance for the medications. Do not replace your Medicare. Keep Medicare as the primary. I refuse to debate this with anyone. It is my opinion and I am entitled to it.

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I am on Medicare part D with AARP through United.

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I don't understand lovecuresall. are you old enough for medicare?

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No not on Medicare, but I have an understand of medical billing and the insurance industry. I know the insurance companies are raking the tax payers over the coals with the Medicare “advantage plans” and the privatization of Medicare. We might as well call them the Medicare “disadvantage plans”. That’s where the insurance company takes the governments money for each Medicare patient and doesn’t pay the providers of the healthcare.....yes like doctors, labs, radiologists etc. Rebublicans and Democrats support it. Yes both parties sold us out. Insurance lobby got their way again and came up with plan to not pay anybody and limit patients’ choices.

Don’t give up your Medicare people. You are a fool if you do! You are giving up your choices of doctors, labs and centers .

Do it to save a couple of dollars and if you really get sick you will regret it. It will take you a year to be able to switch back

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Insurance Companies are the most powerful financial machines on the planet.

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I am surprised to hear Medicare covers it (the “expensive ones...”). I have insurance through my employer (and now the disability retirement employer pension). Different copay and tiers were discussed, and I was told as long as I had commercial insurance (mentioned “not Medicare”) I could be part of a program that reduced my copay further.

I asked about what if Medicare? Because while that is a ways off, part of my employer insurances I have require filing for ssdi. And if ssdi is approve, then Medicare would be sooner...

My notes on the Medicare conversation:

405 Deduct

After ded:

Copay or coinsurance (set percent or set cost)

Until total drug cost gets to 3700 payments (Not sure if it includes deductible or not)

Then “donut hole”

pay another 5k at either 45% of brand name or 58% of generic

After that, 5% of drug cost. If you use a conservative 13K, 5% is 640/mo.

In theory the donut hole could be reached in January of the calendar year.

— end of notes

I will say not just my eyes but my entire brain glazed over. This was taken into consideration when I chose to go the ibrutinib route. But I have to hope that a supplemental health insurance with prescription coverage may still meet the commercial qualification for the program I currently have available if I still need one of these ghastly expensive medications. If not, I was told grants are available, though there were no guarantees that everyone can get one, they said usually it works out. I hope so...

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I remember a time when Medicare had no prescription drug benefits at all.

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Your reply makes it seem as though I was complaining. I am not. I just was confused to see some comments that Medicare covers the drug if it’s an approved treatment.

It may be that it is covered, but the copay is a bit steeper than I can afford for the expensive drugs.

Does anyone know in the case of SSDI (and you are considerably less than 65), whether or not you can defer the start of Medicare providing you have other health insurance?

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I didn’t mean it that way just that it was easier when there was no prescription drug plan. I was using satire. Bad joke sorry.

You can defer taking Medicare benefits by not applying but why would you?

I don’t think you can “defer” disability insurance SSDI as you are either “disable” or you are not. CLL is the disability or something in addition?

Maybe you could apply for the disability benefit at a later date assuming you are still disabled at that time in the future .

I would personally accept and apply for any benefit that I am eligible for and that I earned working all these years and paying into the system.

I would make my other insurance either “primary to Medicare” or “secondary to Medicare” by “coordinating my benefits” which basically means telling each insurance company about the existence of the other.. I think Medicare would become secondary if you still have a good private (commercial) insurance.

I would just ask the hospital or center you are dealing with. Ask their financial services or billing department these questions . You will get free advice and also they will get their bills paid. Remember the pharmacy is the one dispensing the treatment so they need to get paid too and they could be separate from the center that is prescribing the medications. Find out what pharmacy you are dealing with and ask their billers and get more free advice on what to do and how to squeeze every penny out of your insurance benefits .

If you call CMS or Medicare call three times at least for three different opinions on what to do don’t trust the first person who answers the phone. They could lead you astray. I like to corroborate what they tell me by having a couple of supervisors tell me the rules.

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Thanks, LovecuresCLL... I may have been feeling a bit prickly when I read things, so I am sorry, too.

I have applied for SSDI. I went on medical leave in September. I had an insurance through my employer that essentially pays 75% of what you were paid for medical absences after certain waiting periods and criteria are met. Needs one doctor certifying.

Me employer also has a disability retirement option, requiring 2 doctors to certify.

CLL was the tipping point. There are comorbidities. Think of it like a big combo platter, if you will.

The insurance requires that after being on it awhile (for me it was after my first payment, but I had to exhaust all my leave first, so that lasted me 5 months they counted me being on it 7 months at that point) that you file for ssdi, as that offsets what they need to pay you. The disability retirement also offsets/reduces what is paid to you.

Right now, with commercial insurance, my copay is $10 per month, due to both my Insurance and some special program. I was told if I go on Medicare, then the program goes away and the costs of the drug through Medicare were more than what I can afford.

My understanding is if SSDI is approved, then after about 2 years you are supposed to go on Medicare.

I haven’t gotten that far yet to ask additional questions. I will get there, eventually, just have other things to get through first.

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Greetings. I 'm one of the fools. Got Medicare with HMO before I was diagnosed. I'm stocked with huge co-pays. Had a meeting with CHIP and was informed that underwriters of any supplemental insurances would deny me to join. It sounds I only can switch if I move to another city or State which is not possible right now. Wondering if you have any suggestions? Thanks

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Are your huge copays from having an hmo instead of a ppo?

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Thanks for writing. I do have HMO but willing to change to PPO if it helps and health insurance accept me. Thanks for your help.

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While good insurance is a must it has been my experience for my wife and myself that drugs have copay assistance cards BUT you do have to ask or have you Doctor ask

I did a Trial of Jakafi for fatigue and was given a copay card worth 32,000 and got my 13,000 dollar a month pills for 25 dollars a month if i had been on medicare the 32,000 would have picked up the gap

My wife has RA and has been on everything expensive at this point and has always gotten copay assistance

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co-pay assistance cards on not allowed on medicare. in 2006 when medicare started most if not all cancer drugs where chemo and not novel drugs. co-pay cards were banned to prevent drug companies soliciting big name drugs-at the time to people that were basically me too drugs on patents.

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I'm on medicare part d. the yearly copay for imbruvica is 10;000 dollars. the drug itself cash is about 150,000

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So you have supplemental insurance with your part D?

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i don't understand the statement?

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I am on Medicare part D with a supplemental insurance AARP. Maybe I don’t know what I am talking about. 😶

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your co pay on part d. which is the same whether you buy a separate part d plan or as part of medicare advantage is your co-pay. part d has a formula that starts out with a 450 deductible than standard type co-pay until you hit the donut hole then catastrophic prescription insurance of 5 percent of cost of drug until the next calender year. I don;t think you can buy more insurance for your co-pays. You can get added assistance from medicare or some charitable funds if you qualify for low income.

as far as what love cures all said. I have a medicare advantage plan. I needed to go to dana farber which was not in my plans network, However as it was explained to me unlike private insurances my insurance company administers Medicare Advantage is different. If any provider accepts medicare my medicare advantage must MUST approve it. It;s mostly a formality. It is Not like private insurances for people under 65.

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You voted for Nixon and you gave up your Medicare. You stated “I needed to go to Dana Farber which was not on my plan”.

And now you just proved my point.

Don’t give up your Medicare folks. Just add on a nice expensive supplemental and you will never see a medical bill. $450 a month and you can go anywhere in the USA and be seen. I don’t believe that MD Anderson doesn’t accept Medicare. No, they don’t accept all the Medicaid patients. Because Medicaid pays so little.

But they take Medicare 100% or the place would be half empty.

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I have United Health supplemental F but I still pay $700 a month for my Ibrutinib. Am I missing something?

Virginia

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Someone said $10k per year. Price will come down. Don’t worry.

Are you well? That’s not that bad then.

Can you work? If you couldn’t before then you can earn income.

I certainly understand that’s a lot for medicine every month.

Just take it one month at a time then.

With everybody on it..,,,price must come down . That’s law of supply and demand.

Plus acalabrutinib and zanutabrutinib are competitors coming.

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I am very happy to be able to pay the co-pay. I have been on Ibby for 3 years and feel like a normal person -priceless!

Virginia

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why does that prove your point.? I am on a medicare advantage plan at the other end o massachusetts from dana farber. there would normally be no reason to be in boston area hospital networks. But as i said my local doctor wanted me to do a consult and tests at dana farber and my medicare advantage plan paid it all 100 percent even though dana farber not in normal network as i explained before medicare advantage plans are more administrators for medicare . they must allow you to go to any place that takes medicare anywheres

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Only slightly confused. Part D is pharmacy or pills. Medicare part A and B is separate. You get a supplemental insurance to pay copays and deductibles for part A (Hospital) and part B (outpatient clinics and doctors offices) . Part D is the part President Bush Jr pushed through from pressure from the senior lobby to give seniors free drugs so Republicans could get seniors votes for the next 50 years.

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It is always about votes.

And if you look closely, You will see that the swinging pendulum has a blade on the bottom.

The trick is to ride above the blade as it swings to and fro without getting dizzy.

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There is no part D supplemental insurance

Ibrutimide copays changed my mind about in hospital in fusion.

In hospital iv treatment is covered under Medicare part B with a suplement policy should cost 0

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Medicare Part B covers infusions. It plus my supplemental covers my IVIG. and covered Gazyva. Part D covers any treatment in pill form. Contact your state SHIP office for information and advice about plans and supplemental options. I agree - don’t give up your original Medicare. My advice would be to also find a Plan F before they are discontinued if you can.

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Infusion is given in a ambulatory treatment center probably is part B . Pills from outpatient pharmacy is part D . If a hospital gives an infusion it could be part A. And so on and so on.

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As stated above, do not give up your Medicare. Find a good consultant, tell them about your CLL and any other medical issues you might have and they can run the numbers on the options available to see what works best for you. I am on Medicare with a supplement from Blue Cross/Blue Shield. My supplement costs me $168 monthly. I have paid 0 out of pocket in the 2 years I have been on Medicare. I am on a trial, so have not had to use my AARP drug policy for treatment.

BeckyL USA

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Okay Texas girl! Sounds good. You look young to be on Medicare by the way.

-John

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Thank you. I am 63 and am on SSID.

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I’m so confused! 🙃

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Hi Suzie,

Medicare is confusing and takes lots of detailed study. Fortunately there are programs in each state to educate patients and provide counselors. If you are in West Virginia then go here: wvseniorservices.gov/Stayin...

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SHIP (Medicare Counseling)

West Virginia SHIP (State Health Insurance Assistance Program), begun in 1992, provides free, objective, and confidential help to West Virginia Medicare beneficiaries and their families who need information about their Medicare benefits, Medicare supplement insurance companies, supplement plans and monthly rate comparisons (updated April 2019), long-term care insurance plans, and help with paying Medicare costs.

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West Virginia SHIP is part of a national network of state health insurance assistance programs, which receive financial assistance from the Administration for Community Living.

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West Virginia SHIP has a statewide toll free number (1-877-987-4463) that anyone can call to receive expert advice from a SHIP counselor. SHIP will also provide educational workshops for consumers or professional groups who need more information understanding Medicare benefits. For more information about West Virginia SHIP, please contact the SHIP State Director at 1-877-987-4463 or contact the SHIP program online.

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Please visit the SHIP website at wvship.org

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To find the SHIP programs in other states go here:

medicare.gov/contacts/#sear...

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Len

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Thank you, Len. Your links are very helpful and informative. 😊

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I am also in Texas I have Medicare and Texanplus. Was on watch and wait for probably six years. Just started imbruvica one month ago. The cost is $12,000 a month. with my income being only social security and a little bit of retirement I qualified for assistance. I'm reading some of these posts that say somewhere this drug is covered 100% I've never heard of that, but could be. True. The pharmacy in the hospital where my oncologist is then got me help through some fund because of my income., originally checking into this the insurance would approve the drug with a $2,500 a month copay. I am assuming people who do that Are retired oil barons with barrels of money. And then as I understood it, after you pay in I think it's $5,100 then u r in catastrophic coverage for the drug for the rest of that year.

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Medicare in some cases will cover part but not all of the costs. Ask your doc what funding grants are available to greatly lessen/completely cover the cost. I went on Imbrutinib after my relapse and the cost/month was $13,000+. My doc’s pharmacist found a grant that covered the total cost. There are some income requirements that you have to qualify for. Hope you find a solution

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was that your co-pay? i think you made an error. 13,000 would be the total cost per month if you paid cash. your co-pay like mine would have been about 10,000 a year. the grants that are available pay the medicare part d co-pay not the entire cost. as with most extra help it depends on your income-my wife and i income was higher than the 78,000 they allow. 401 k withdrawals- the minimums required-put us over.

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My co-pay would have been $2,400/month which I couldn’t afford.

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thats not true. i see you misunderstand medicare part d. So do the people at my specialty pharmacy. the first filling for me was 2400 dollars. thats because part d does the 450 dollar deductible plus the donut hole plus co-insurance at the beginning up to the 5100 dollars which actually drugs like imbruvica are forced under law to make up to the 5100 dollar max on the regular part d. then you are into the 5 percent catastophe insurance. so for me -i started filling jan 7 2019. the first fill was 2400 dollars. every fill since then has been 623 dollars which it will be until the next jan 1. It's amazing the number of insurance people at the doctors and pharmacy that don't understand how part d works. I was told the same stuff after the first fill. However i am a former retail pharmacist in USA. I knew how it worked.

if you had kept filling under part d the same would have happened.

2400 dollars then 623 every filling therafter. 13 total fillings 10,000 per year the foundations pay the co-pay

this article is from 2018- however it explans this very well if you look at the chart on it you'll see that the bulk of the yearly co-pay is done in the first quarter of filling(3 months)

healthaffairs.org/do/10.137...

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Well I’m sure that the med cost me $0

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that's the best part

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Your Hematologist should help you get a grant through the PAN foundation. Between the grant they gave my husband and Medicare we had s zero co pay for Imbruvica

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You also can apply yourself but you need to be on a treatment

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Txsgrl:

Unfortunately, Medicare Part D Plans are hard to understand. Below is what I gleaned from the Medicare.gov website. I've also included a link to a helpful diagram. Hopefully, it all makes sense.

The good news - there is a limit as to what you will pay out-of-pocket even for the most expensive meds.

The bad news - it can still be a lot of money.

The better news - talk to the finance/insurance expert at your hematologist's office to see how you can reduce your total out-of-pocket expenses.

Most Medicare Prescription Drug Plans charge a monthly fee that varies by plan.

*You pay this in addition to the Medicare Part B premium.

Deductibles vary between Medicare drug plans.

*No Medicare drug plan may have a deductible more than $415 in 2019.

*Some Medicare drug plans don't have a deductible.

The amount you pay for each prescription after you've paid your deductible is either:

*a copayment. (like, $10) for all drugs on a tier (or)

*Coinsurance. (e.g. 20% of the cost of the drug.)

Most Medicare drug plans have a coverage gap (also called the "donut hole").

* In 2019, once you and your plan have spent $3,820 on covered drugs, you'll pay no

more than 25% of the plan's cost for covered brand-name prescription drugs

After paying $5,100 out-of-pocket in 2019, you're out of the coverage gap. At that point, "catastrophic coverage." takes over.

*You will only pay a small coinsurance (5%?) or copayment for covered drugs for the rest

of the year.

Below is a link to a helpful diagram.

google.com/search?q=medicar...

TMwaP

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Very helpful post - thank you very much!

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Thank you so much for this information. I really appreciate it.

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For those in the US,the two grants most commonly mentioned are the PAN Foundation grant and a grant from lls.org

Many centers seek out and get grants for patients without any discussion about it. You may have to ask, but unless you are dealing with a small practice, there should be someone in the finance office who can help you. If not contact one of LLS’s financial advisors.

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Which country do you come from? Medicare is great in Canada and Australia.

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It's very hard to get ibrutinib in Canada. Most specialists insist that you do FCR first even if you are unmutated.

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hi

if you're on watch and wait ,,, it would be hard to tell what drugs might cause by the time you get around to needing them. Or, even what drug you might take.

As you can probably see from the replies that you have gotten there is a lot of confusion about insurance.

I scanned the first dozen or so posts and it looked like some of them hit the high points. Here is some of the advice I agree on

1. if you are of Medicare age do not let anyone sign you up for the "advantage plans".... They should be outlawed, in my opinion.

2. Medicare ,,,,contrary to some opinions ,,, is not free

3 . There are different parts of Medicare ,,these are called plans,,, the ones that I am familiar with our... Plan A = hospital care ... plan B = outpatient care .... and plan D ,, which is medicine/prescriptions .....Plan Dis a little bit different then plan a and B (not only about what they cover) but it is something if you wanted ,you must buy. And there's all kinds of different companies that you can buy through. Don't confuse these companies with the advantage plan companies. Plan D is a horse all of its own.

Now if the above sounds complicated ,,, that is because it is,,, and I am pretty sure that's intentionally so. Anyway the type, and the amount, that you pay for your plan D will determine how much your drug costs

here is a for instance ,,,,, the figures that "Ivotedfornixon" is using look about the same as what I am experiencing. I too am on imbruvica. it looks like we will be paying between 12 and $15,000 this year. That is my co-pay for part D,,,,I say about because even the co-pay is not straightforward ,,,, there is what you pay the first month or so .... Then there's a doughnut all.... Then there's a cap where I think ( I couldn't get the insurance company to tell me for sure) but I think after X thousands of dollars is spent you have met some kind of threshold where after that you only pay 5% of the drug cost. But, it's 5% of the retail drug cost which is a figure that's very very hard to get. It looks like it's probably $15,000 per 28 pills. There are probably people over here that have done a year or so that might be able to give you an exact cost. But, that exact cost will be based on their type of plans and their individual types of co-pays. Plus, I think that it may vary by state.

Very very complicated on top of being sick and not really having the energy to deal with it. There is one other little tangent that you might want to pay attention to which is ( for me on my plans) if I were receiving infusions they would be currently covered by ,,, I think plan B of Medicare and for me there would be no co-pay.

Gosh ,what a long rambling post. I'm sorry if I have not helped you with the exact costs but, in my experience they're very hard to pin down.

And, the way things are going in the US today ,,,, all of the above could have changed over the next year or so.

Very very confusing,,,, to me

help everybody's doing as well as they can do ,,, tomorrow is a new day

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Thank you so much for your explanation. At the moment I am on social security disability. I am 63. I do have a united health care advantage plan. Is that not good? I am at stage zero just got diagnosed in November. I was curious about costs. A little overwhelming. 😳

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