Insurance question

[Myoak]

It is really great to see people actively supporting issues, like insurance, that are critically important to well-being.

MS meds are so expensive, even with insurance, but they are simply unaffordable w/o insurance. The drug company co-pay programs are withdrawn when a person goes on Medicare. So those approaching that age will want to be aware of that. When my spouse goes on Medicare soon she will go from paying almost zero for Ocrevus (because of drug company co-pay assistance) to paying $3,550 per dose for Ocrevus (that does not include the substantial infusion cost).

Thanks to everyone for being involved; yes, it does make a difference.

Gargantua, whatever link you attempted was shot down, however, you could list the title of what to google for us to find it. A title to google is always allowed.

Thanks again to everyone!

[gargantua]

It is really great to see people actively supporting issues, like insurance, that are critically important to well-being.

MS meds are so expensive, even with insurance, but they are simply unaffordable w/o insurance. The drug company co-pay programs are withdrawn when a person goes on Medicare. So those approaching that age will want to be aware of that. When my spouse goes on Medicare soon she will go from paying almost zero for Ocrevus (because of drug company co-pay assistance) to paying $3,550 per dose for Ocrevus (that does not include the substantial infusion cost).

Thanks to everyone for being involved; yes, it does make a difference.

Gargantua, whatever link you attempted was shot down, however, you could list the title of what to google for us to find it. A title to google is always allowed.

Thanks again to everyone!

Thanks Myoak for your great advice as always.

Find the first article, an analysis of difficulties to dismantle the ACA, by googling "Removing ACA Would be a Headache for Trump"

Other interesting stuff for brushing up on the ACA:

Today: Senate GOP does not want to deal with healthcare debate heading into 2020
*** Google: "Mitch McConnell ACA"

Excellent 2015 Forbes piece on ACA Effect on Patient protections and health costs
*** Google: "Has Obamacare Fixed US Healthcare Inflation?"
"In 2015, under the ACA, health care spending grew at the slowest rate since 1960. Meanwhile, in that same year, health care price inflation was at its lowest rate in 50 years."

Full report on ACA performance until 2016
*** Google: "Improving Health for All Americans Obama White House"

[gargantua]

MS meds are so expensive, even with insurance, but they are simply unaffordable w/o insurance. The drug company co-pay programs are withdrawn when a person goes on Medicare. So those approaching that age will want to be aware of that. When my spouse goes on Medicare soon she will go from paying almost zero for Ocrevus (because of drug company co-pay assistance) to paying $3,550 per dose for Ocrevus (that does not include the substantial infusion cost).

This is horrible and it has to change. The last point at which people should be charged prohibitive health costs is when they retire. I don't know much about whether people "have to" transition to Medicare. If the ACA laws remain in place, is a private policy cheaper with better coverage?

[Myoak]

This is horrible and it has to change. The last point at which people should be charged prohibitive health costs is when they retire. I don't know much about whether people "have to" transition to Medicare. If the ACA laws remain in place, is a private policy cheaper with better coverage?

I have not looked into that specific question, however, off the cuff I would say there are very few people who would pay less w/o Medicare coverage. Interesting question though... would co-pay assistance end only because you went on Medicare OR do the drug companies end co-pay assistance when you get to the age of medicare, regardless if you went on it or not? I don't know the answer to that.

I believe a person would have to be exceptionally wealthy not to accept medicare, but there may be other reasons not to accept it that I don't know.

My situation is that I have Medicare supplemental coverage through the union I retired from. I have not had a claim, yet, so I am unsure how much of the $3550 for Ocrevus they will pay.

Not the best thread to mention this but... my spouse will not be getting Ocrevus every 6 months (thank God!) because her neuro has agreed to infuse only when certain B-cell lymphocytes (CD20) rise to a certain level. Ocrevus wipes those out and that is thought to be the reason Ocrevus is effective against MS.

There is no need to keep infusing Ocrevus (continually smashing down your immune system with each infusion) if the CD20 remains gone. As long as CD20 remain diminished it seems unlikely MS will be a problem, HOWEVER, that is only theory at this point and must be proven.

That said, it is extremely likely, IMO, that Ocrevus is infused more often than required to control MS. If it is infused to kill CD20 and if CD20 has not returned, why infuse it until it does return? honestly, there is no good reason to infuse it and plenty of good reasons not to.

I went through a similar process with Tysabri in that I pounded the table for less infusions based on the idea you could decrease risk and remain protected from MS. It was a theory which had strong evidence, as does this one... Ocrevus does not need to be infused as often and there is strong scientific evidence supporting that theory, just as there was with Tysabri.

IMO, 5 years down the road, most on Ocrevus will be infusing as my spouse does... not every 6 months but as needed based on blood makers. I was so happy her doctor agreed to do this, I could have cried, I am so thankful.

I expect that several years down the road when patient populations are compared, fewer serious infections and fewer cancers will be seen in the group who get Ocrevus less frequently. Only the data will tell if that is correct. But I am convinced all the puzzle pieces are there right now to see that picture.

Recovery of CD20 cells on rituximab, which is very similar to Ocrevus varies individually from 7 to 32 months. Each individual recovers CD20 at a different rate. So, some may need Ocrevus at 6 months or 8 months or 1 year or 2 years, or more. If infusions are one per year instead of two per year, obviously, the cost is reduced by 50% which is huge. However, the primary reason is to achieve better health by taking fewer infusions.

The drug company is sure to fight this like demons, IMO, because they want to sell their product.

But as stated, IMO, this method will prove effective, cost less, and lead to better health because the immune system will be more intact. So, IMO, in 5 years everyone on Ocrevus will be having a conversation about the need to take it every 6 months, or is there a better way. There is a better way, IMO, and the neuro has agreed to do it. I have a ton of respect for him. And no, I cannot mention his name, per his request.

Sorry about running on and on.

[MisterMan]

Myoak,

Thank you for your insights and perspective.

My situation is that I have Medicare supplemental coverage through the union I retired from. I have not had a claim, yet, so I am unsure how much of the $3550 for Ocrevus they will pay.

I hope your coverage works out better than you expect.

Insurance is a great concern to me. I am 53 and foresee changing my employment situation and moving states in the next few years, and without my Fortune 200 company group plan I don’t know what healthcare costs will be like...unless I find another large company to work for; this is not my preference though.

I am currently the primary income earner and would really like to start a business before reaching retirement; but without good spousal coverage I fear that healthcare costs will ruin our finances.

If pre-existing conditions are no longer protected I would be reliant on my spouse finding good employment coverage until I’m Medicare age. She is 6 months older than I and I don’t want to be the reason she continues to work!

IMO, 5 years down the road, most on Ocrevus will be infusing as my spouse does... not every 6 months but as needed based on blood makers.

As an Ocrevus patient, I certainly hope this comes sooner than 5 years.

[Myoak]

As an Ocrevus patient, I certainly hope this comes sooner than 5 years.

It is so tough to be in the workforce and keep abreast of MS treatments. There are so many options and nuances to each. Infusions of Ocrevus based on blood markers, or individual need is the tip of the spear thinking regarding alteration of infusion schedule. It took me hours and hours of preparation to make a coherent argument with the neuro for doing so. But the fact he agreed informed me that this thinking was not new to him and indeed, was already something that had been rolling around in his mind.

My point here is... if you can manage the time to educate yourself on why less-frequent dosing may be just as effective as every 6 months and also be safer... and you can have that conversation with your neuro, then he/she MAY agree to less-frequent dosing for you.

Honestly, it is not complex. It is as obvious as the nose on your face based on this fact... after the Ocrevus Phase 3 trial ended, those who discontinued Ocrevus (after taking it for two years) showed no more MS progression than those who continued getting infusions every 6 months. They were followed for 18 months post trial. The obvious conclusion is that Ocrevus is NOT needed as frequently as every six months after the first two years on it.

How long it will take for current practice to incorporate all this will vary greatly among individual neuros and patients.

This thread is about insurance and we need to keep the focus there as much as possible but I wanted to offer whatever I can which might help someone avoid a serious health issue if they can treat MS and harm their immune system as little as possible.

Thank you for your kind expressions MisterMan, I wish you the best!

[gargantua]

I have not looked into that specific question, however, off the cuff I would say there are very few people who would pay less w/o Medicare coverage. Interesting question though... would co-pay assistance end only because you went on Medicare OR do the drug companies end co-pay assistance when you get to the age of medicare, regardless if you went on it or not? I don't know the answer to that.

Hi Myoak, I just found this:
There is no age limit with the ACA, but if you qualify for Medicare there essentially ends up being an age limit (as you will qualify for Medicare around turning 65 and thus no longer be eligible for private coverage with ACA assistance).

In 2015 under the ACA's individual mandate, healthcare cost inflation had reached its slowest rate since 1960. Now that the individual mandate is stricken down, there will be more and more truth to the statement "it's a disaster."

In 2018 my ACA-subsidized policy cost 1100 a month (I pay 30% based on my income level). This year it went up to 1200. Because the individual mandate was removed and there are now less funds in the pool being shared by people who are covered under the ACA, this direction will continue.

Many people resent having to pay for something they think they won't use. Some don't appreciate that others pay less. In regard to health care these beliefs unwittingly ignore future generations.

Anyway, I just don't think finding a way to lower health costs is going to be the ultimate answer to keeping our population healthy. Things like better nutrition education and lifestyle changes early in life, eliminating certain industrial toxins as a society, and more discoveries about diet and the microbiome are going to be what evolves a healthier humanity.

[Myoak]

Hi Myoak, I just found this:
There is no age limit with the ACA, but if you qualify for Medicare there essentially ends up being an age limit (as you will qualify for Medicare around turning 65 and thus no longer be eligible for private coverage with ACA assistance).

In 2015 under the ACA's individual mandate, healthcare cost inflation had reached its slowest rate since 1960. Now that the individual mandate is stricken down, there will be more and more truth to the statement "it's a disaster."...

Anyway, I just don't think finding a way to lower health costs is going to be the ultimate answer to keeping our population healthy. Things like better nutrition education and lifestyle changes early in life, eliminating certain industrial toxins as a society, and more discoveries about diet and the microbiome are going to be what evolves a healthier humanity.

Thank you for your excellent reply.

I would add that I believe rising medical costs are the biggest problem ANY type of insurance plan faces public, private or a hybrid of those. I believe rising costs are destined to undermine whatever plan is proposed by either political party.

For example, Tysabri cost about $23k annually in 2006; today it is about $69k. A 300% rise in 13 years is what bankrupts any insurance plan, IMO, regardless of who proposes it. Rising medical costs are bankrupting America, Democrats and Republicans alike.

I agree with the data you posted... that under the ACA healthcare cost inflation reached its slowest pace since 1960. The ACA was achieving the best results possible in this country where it has become practice to increase medical prices each year as if it were a divine edict. But as you noted, efforts to demolish the ACA are being successful. There are no easy solutions and anyone touting such is disingenuous.

I also agree the best way to lower health costs is to keep ourselves as healthy as possible through knowledge, diet, exercise, limiting adverse environmental exposures and the forsaking of some vices. I don't believe we have to be extremely disciplined to accomplish a little in each of those areas and benefit significantly.

[MyGirlsMom]

Myoak,

Great information provided and I appreciate your thoughts on the dosing of Ocrevus. An acquaintance is on Rituxamab and her neuro manages the dosing based on blood test for levels like you mentioned.

I am getting a lot of pressure from my neuro to get back on a DMT (although I have had no new lesions in the past decade) as I stopped Copaxone a couple years ago. He recommended Aubagio and I suggested Ocrevus. You provided a lot of good information, but I can’t seem to figure out how you found that detailed info on the drug. Would you please direct me? My appointment is in April and I am trying to be prepared in advance.

Many thanks to all who have contributed....good discussion!!

[Myoak]

Myoak,

Great information provided and I appreciate your thoughts on the dosing of Ocrevus. An acquaintance is on Rituxamab and her neuro manages the dosing based on blood test for levels like you mentioned.

I am getting a lot of pressure from my neuro to get back on a DMT (although I have had no new lesions in the past decade) as I stopped Copaxone a couple years ago. He recommended Aubagio and I suggested Ocrevus. You provided a lot of good information, but I can’t seem to figure out how you found that detailed info on the drug. Would you please direct me? My appointment is in April and I am trying to be prepared in advance.

Many thanks to all who have contributed....good discussion!!

Hello MGM,

First let me say something about the newly approved drug cladribine and with the disclaimer that I can be overly opinionated so be forewarned and please distill anything I say.

50+ years ago when I was a boy the animal vet who came out to treat our sick cow dosed the medicine according to the weight of the cow. Dear God! Finally, in MS a medicine will be dosed according to weight, Cladribine! By golly, that is progress!

Please understand that cladribine is an oral, you take it for only about 10 days each year for two years and often no more. I do not know precisely how it will be prescribed HOWEVER, in most trials it was taken orally as one tablet (the milligrams depend on weight) for 4 to 5 days, then wait a month and taken for 4 or 5 more days. After one year that course was repeated; that’s it, no more unless needed. I’m sure a similar regimen will be very close to how cladribine will be prescribed. Depending on MS activity and certain blood markers many pwMS will not need another treatment course for YEARS.

I hope everyone understands this new med also leaves your immune system more intact than other highly effective treatments such as Ocrevus, Tysabri, or Lemtrada. Also, personally, I would question the competency of a neuro who would prescribe any of the other 4 orals in place of cladribine because cladribine is more effective and is safer than any of the other 4 orals, IMO.

Of course, there are responders and non-responders to every MS med. But we often start a treatment based on trial results and based on those cladribine compares favorably to the other orals.

Okay, MGM… obviously I mentioned all that because you are discussing going on a DMT and the new DMT, cladribine should be included in that, IMO.

However, since your question concerned Ocrevus, I will put my reply in the Ocrevus thread, if you don’t mind, rather than here where the topic is insurance. Thank you for your question, I’m sure others are interested, also. So, see ya in the Ocrevus thread!

[gargantua]

I would add that I believe rising medical costs are the biggest problem ANY type of insurance plan faces public, private or a hybrid of those. I believe rising costs are destined to undermine whatever plan is proposed by either political party.

Yes, and that is why a public form of management of health insurance needs to happen. Why do we have to politicize keeping people healthy? Very few people can afford major health problems out of pocket.

To keep this thread on the insurance question, since people are probably worrying about it,

Full report on ACA performance until 2016
*** Google: "Improving Health for All Americans Obama White House"

Latest
*** Google: "Judge Rules Against Measure to Undermine ACA"