Stampede on the Horizon

Twice this morning I caught only the tail-end of a news piece on health insurance, so please forgive the fuzzy details. It seems that there is a movement starting amongst U.S. health insurance companies toward a different way of "handling" coverage of what are categorized as "4th tier" drugs. This 4th tier includes the very expensive medications commonly used by people with chronic inflammatory illnesses.  The trend is that the companies will not pay for very much of the expense of these drugs, nixing the usual low amount of the expected co-pay.  Instead, patients are meeting with a rude shock when they show up at the pharmacies to get their prescriptions.  It seems the movement is growing and is expected to become the norm within several months.  Any elaboration on this will be appreciated from someone who knows more about it.

So, what will that mean to this site?  There will probably be a stampede away from the interferons and other obscenely expensive drugs offered to us chronics.  People will start investigating other options, and they will find us.  This will be a wonderful turn of events for those who discover the site, but the trickle of newcomers (that recently became a stream) may seem like an overwhelming flood a few months from now. 

Not only will the numbers of those future newcomers be comparatively great, they will also be a different crowd.  Most likely they will be folks who have faith in the mainstream treatments, and they will resent having to resort to what they deem to be inferior, dangerous alternatives (like abxi).  We must prepare to welcome these newcomers carefully, gently, with understanding.  This will be very difficult for many of us (including me). 

Comments

Hi Joyce, again behind in my

Hi Joyce, again behind in my reading.  Currently I am paying Roxi out of pocket. Doxyi and Tinii were in the 20% copay catigory.   I got an Rx for Azythromycin and tried to have it filled the insurance company has decided that no one needs more than 6, 150 mg tablets per month so the second six would be self pay.   I had another appointment and asked to be switched to clarithromycin, will soon see what they have as rules around that abxi.  In the meantime I still like Roxi and it just may be best to continue given the cost vs benefits etc.  Roxi is very easy to take from my experience.   

My second rx for tini I priced out at the Insurance Co. mail away pharmacy, they have decided to try and force the alternate Flagyli and pay much less of the cost of the tini than they did for the past rx of 180 tablets that I have already had dispensed, guess that should last me a few months! ( I did not need the rx yet and did not fill it there, I was just asking).  Tini must now be on the 4th tier with azythro moving on up that way.

  Louise, CFSi. CPnPositive. BbPositive. WheldonCAP began6/24/07. NACi,Doxy, Roxi,FullTiniPulses. Intermittent Cholestyramine,1-2packets, at bedtime,most often with pulses,and as needed, for Phorphoria & liposacaride Endotoxini Die-OffExperiences.

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

 Hi- I have some experience

 Hi- I have some experience with this "new" processing of med claims.  One of the meds I take that is not part of the CAPi protocol used to cost me $156 co-pay each month.  Well, I went to pick it up in March and the price tag was $755.  I simply couldn't buy it.  I called the prescribing doc and she sent me some samples to use in weaning myself off of it safely.  There is no other med that has the same action, so I'm just SOL.  When I checked out of country, no one is carrying it.  It sure ticks me off that Insurance companies can practice medicine on us--without a license or our permission.

 On a slightly different note, the newest configuration the insurance companies are coming up with has two parts to it.  First is a high deductible--catastrophic major medical plan.  This will not pay for much unless you are unfortunate enough to need multiple major surgeries and long hospital stays.  Second is a Health Care Saving Account(HCSA).  Different from the Health Spending Accounts(HSA) in that it is an actual savings account in your name which you contribute to via payroll deduction and sometimes employer additions.  The government still puts a cap on the annual amount you can deposit to the account annually, but it rolls over if there's some left at year's end.  It can turn out to be quite a little nest egg which can be used after retirement age to augment your income.  The idea is that you use the HCSA to pay for health costs--IF you actually meet your deductible--$4500 for 2 people, then anything "IN NETWORK" is paid for 100%.  The good news, all meds are in network.   So if you are either really healthy or quite ill(like us) this plan may come out to your benefit.  It's not quite May and I've finished our deductible, so I'll be saving about $2800.00 a month through Dec. just in meds.

I hope that in some convoluted way this is something to sort of look forward to for many of you who are suffering the financial sting of being this ill.

All the best, 

DD 

Dxi:CFSi/ME;CPni;Post Polio:  On CAP since 3/05. Azith 500mg MWF, Doxyi 200mg bidi, NACi 1200 mg bidi, Calcium Pyruvate 488mg/2.1GM bid, flagyli pulses, (gobs of activated charcoal), B6, B12, Magnesium, Magnascent, Cholestyramine.

DD

Dxi:CFSi/ME;CPni;Post Polio:  On CAPi since 3/05. Azith 500mg MWF, Doxyi 200mg bidi, NACi 1200 mg bidi, Calcium Pyruvate 6GM bid, flagyli pulses,  B6, B12, Magnesium/Potasssium 2400/400 dly, Magnascent, Cholestyramine, D3 2GM dly, .

thanks for the post Joyce. 

thanks for the post Joyce.  this is very interesting.  I hope the newbies from this spin off can see the forest for the trees.  I am thinking that if an attitude pops up when someone is experiencing the kiss from the Troll Queen flagyli they may be offered up a small can to "toxin talk" for their efforts!

The more the merrier!

I pay a 20% co pay with my spouses' employer extended health we have through Blue Cross.  Our costs for the 3 I am taking are not bad.

 

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Many of the major US

Many of the major US insurers have offered a 4th tier pharmacy benefit design as an option to their employer customers for years.  Not  a lot of employer takers yet.  4th tier as Joyce says is generally a percentage of the price of the drug each month - usually 20% rather than a flat copay.

So if your employer offers a pharmacy benefit plan that has a three tier drug benefit - it may be something like this $5 most generics, $25 formulary items and $50 non formulary items, etc... with numerous variations.  Adding a 4th tier for certain meds could easily be a 20% copay.

The interesting thing - it's not the health plan to blame for crappy pharmacy benefits - it's the employer - employers choose from a smorgassboard of options.

This type of benefit design so far while available for years - most employers haven't jumped on yet because there will be a mass outcry of the seriously ill or caregivers of the seriously ill. 

Financially times are a changing for US employers so it may become more palatable. 

Also most drug manufacturers have secret "foundation" supply kitties in which they dump millions into disease specific foundations to pay for copays for those who are financially needy- could be someone making $75k per year with 3 kids, - you never know - let's just say - the money is there if you look.

The only good news is that the 20% per month usually counts towards your out of pocket max per year which is usually in the $2500 to $3500 per person range these days. 

Many employers - mine included which is a very large and profitable company - have forced us to pay all drugs at a 20% copay for years on all prescriptions. 

Other food for thought - only 2 out of 3 prescriptions written by a US physician is actually filled at somepoint.

Of the 2 out of 3 prescriptions filled at a pharmacy about 1 out 2 is actually taken by the patient.    This means only roughly 1 out of three prescriptions written by a US doctor is actually taken by the patient.

There are loads of people with high dollar medications stacked up like planes at O'Hare in their refrigs.  Going to 20% coinsurance for prescriptions will lilkely change that and people may begin to look for other - less expensive options. 

 

Daisy - Husband on CAPi 5/07.   Roxyi, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Minoi<

Daisy - Husband on CAPi 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MSi drugs killed him.

Daisy on her own CAP 11/2012. 

Got me, Joyce. I will

Got me, Joyce. I will behave, I will behave, I will behave.... thanks for the warning. No, that's not what I meant....just thank you.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 50 pulses NC USA

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

 Stampede is right, Joyce.

 Stampede is right, Joyce. A whole bunch of people are going to be weighing cost vs benefit and deciding that expensive but minimally beneficial or unknown benefit drugs are no longer the first choice to make.

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 250mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Jim,  Glad to hear from you

Jim,  Glad to hear from you on this.  I've been surprised at the lack of interest in this thread.  This news is momentous to this site even though we might not be feeling the effect of this trend at the moment.

Michele,  Thanks for what you are doing for the site right now and all the time.

Self,  Be patient with those unfortunates in the future when they show up here with lousy attitudes, unused to trying to understand their own treatments, unwilling to read the handbook, hard-headed, mainstream doctor worshipping, FDA loving, .............................. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce, Lack of interest?

Joyce, Lack of interest? What did I miss!?! It was posted today and already has half a dozen responses, even before people make it home from work, have their dinner, stop at the grocery store... I'd say, since this impacts all of us to some degree, there'll be huge interest in this post, once people find out what the topic is. Feeling very lucky I never went the Copaxone route now...$$$

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Our paper had an article

Our paper had an article about this last week.  A woman with MSi who used to pay $20 a month for Copaxone was surprised to be charged $325, which will be her monthly co-pay going forward.

I used to take Betaseron.  When I first started in 2000 it was $989 a month without insurance.  Before I quit taking it in 2006 the price had gone to $1,500 a month.  My co-pay at that time was over $300. And it didn't work, and probably did harm!

****** 

Positive Cpni and Bb dxi'd November 2006.  Previously dx'd RRMSi May 2000.  Treated by Lyme MD as of 11/06.  Current regimen is Bactrim DS, Roxithromycin. Rifampin and Tetracycline.  Also NACi, probiotics and a few supplementsi. 46 year old mom of two teenagers. Rhode Island, USA.

Positive Cpni and Bb dxi'd November 2006.  Previously dx'd RRMSi May 2000.  Treated by Lyme MD as of 11/06.  Current regimen is tetracycline, Difllucan and Mepron.

A jump from a $20 co-pay to

A jump from a $20 co-pay to $325 would also provide a convenient excuse to people who are only taking the expensive drugs because they are well-insured and their doctors won't treat them if they don't shut up and take their interferon. 

CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week) ceased 3/2008, 150 mg Roxi (2 x day) starting 3/2008. Seventh pulse metronidazolei completed 4/11/2008.

CAPi for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazolei + INHi completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

What does Tysabri cost,

What does Tysabri cost, retail, anyway? Just curious.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

My insurance plan doesn't

My insurance plan doesn't cover Tysabri, so their on-line pharmacy won't price it.  On MSWorld, I saw a post saying that between the co-pay and insurance payment, it was about $2,750 per infusion which worked out to an annual cost of $33,000. 

Among the M.S. drugs my insurance will pay for, their on-line pharmacy shows the following costs (co-pay and the insurance payment are added together):

  • Avonex costs about $1,750 a month ($21,000 a year)
  • Betaseron costs about $1,700 a month ($20,000 a year) 
  • Copaxone costs about $1,900 a month ($22,000 a year)
  • Rebif costs about $1,400 a month ($17,000 a year) 

 

CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week) ceased 3/2008, 150 mg Roxi (2 x day) starting 3/2008. Seventh pulse metronidazolei completed 4/11/2008.

CAPi for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazolei + INHi completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

A co-worker just went on

A co-worker just went on Tysabri and I think Blue Cross is paying the whole thing except a $20 co-pay. Wow. Sickening prices.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Read this

Read this earlier

http://tinyurl.com/63443s 

Daisy - Husband on CAPi 5/07.   Roxyi, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Minoi<

Daisy - Husband on CAPi 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MSi drugs killed him.

Daisy on her own CAP 11/2012. 

Thanks hd,  When Steve quit

Thanks hd,  When Steve quit Rebif two years ago, it was costing our insurance company over $2,000 per month. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

For clarification, here is

For clarification, here< is a version of the same story in Colorado:

As prescription drug prices rise, more and more health insurance carriers are balking at covering expensive drugs with only a small copayment from the insured< (registration required). Lately, we’ve seen many of the Colorado health insurance carriers adding a fourth tier to their traditional three tier system of pricing drugs - with Tier 4 being a percentage rather than a flat copay. While you might still get a generic for $15 and a brand name for $40, you could be in for a nasty surprise if you end up needing a prescription that is classified as a Tier 4 or 5 drug. These tend to be high-priced drugs that can cost thousands of dollars a month; more and more health insurance companies, motivated by a need to cut costs, are only paying a percentage of the total bill. Some of the medications used to treat relatively rare diseasesi like MSi, rheumatoid arthritis and some types of cancer can cost $100,000/year. Even a small percentage of that amount could be crippling to a patient already struggling to stay afloat under the stress of treatment.....

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.