• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Help choosing insurance, antiviral coverage

maddietod

Senior Member
Messages
2,856
I'm signing up under the new insurance regulations (US), and the cost of medications looks like it will be a major expense.

I saw Dr. Rey last week, which means I'll get test results and a follow-up consultation in mid-January. She expects to put me on antivirals.

Which antivirals does she commonly use? Does anybody know how much they cost?

Thanks!
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I would hold off as long as you can, I hear/read there are security issues with the system. Wouldn't want you to have a hassle with someone stealing your identity etc..

GG
 

maddietod

Senior Member
Messages
2,856
I'm signing up with a facilitator, using her secure computer which has a direct secure portal to Maryland's insurance platform. I have to cancel my current insurance by Nov 30th, or automatically commit to a full year starting January 1st. I don't want to cancel until I'm sure of my options and expected costs.
 

maddietod

Senior Member
Messages
2,856
Last year I tested positive for HHV6, chronic parvo, and EBV. I was negative for coxsackie and CMV. Assuming my results are the same this year, can anybody tell me which antivirals she's likely to put me on, and what the usual dosage ranges are? You could PM me if it's not OK to put it here.

Also, I'll pay 20% of the cost of a normal generic, more for 'preferred' generic, more for brand name, and 50% for a 'preferred' brand name medication. Do any of you know which classification Dr.Rey's antivirals fall into?

I'm trying to pick a plan with the best balance of monthly cost, deductible, and yearly out of pocket maximum. I can only do that if I can guesstimate my expenses.

Thanks.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I can't say what Dr Rey might do but typically one needs Valcyte for HHV6. I take 900 mg twice a day. There is no generic for this med.

For EBV, I take Valtrex at 1 g four times a day. According to Dr L, approved generics are by Mylan or Teva.

Ema
 
Messages
2,562
Location
US
I'm trying to pick a plan with the best balance of monthly cost, deductible, and yearly out of pocket maximum. I can only do that if I can guesstimate my expenses.

A plan with a flat fee seems much better, if that is possible to get. Most are $15 or $20 for any prescription. I guess you checked that. If available they must cost a lot, but those drugs costs can add up fast :thumbdown:
 

maddietod

Senior Member
Messages
2,856
I haven't seen any plans that are easy to understand or navigate. I need a national plan because I go to Florida to see Dr. Rey, which gives me Blue Cross or United Healthcare. They are all percentage-based.

Except for one I just found that looks like they cover everything - no tricks at all - but I can't go out of network. I'll call them on Friday to make sure I understand the plan correctly, and that my doctors and hospital are in network.

It feels a little dangerous to not be allowed to go out of network. What if I have an accident and go to the hospital? They won't necessarily use my in-network doctors, will they???
 
Messages
2,562
Location
US
They probably have an exception for inpatient care. (I hope so anyway. It is crazy if they're allowed to not cover you at all in that situation.)
 
Messages
6
Many of the anti-virals are cheap. A 90 day supply of acyclovir costs $10 at Walmart.

The biggie is valcyte, which is prohibitively expensive without insurance coverage. Some insurance plans will only cover it for a short period, others will not cover it for a cfs diagnosis. Very difficult to get information on valcyte coverage.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,074
Location
australia (brisbane)
Many of the anti-virals are cheap. A 90 day supply of acyclovir costs $10 at Walmart.

The biggie is valcyte, which is prohibitively expensive without insurance coverage. Some insurance plans will only cover it for a short period, others will not cover it for a cfs diagnosis. Very difficult to get information on valcyte coverage.

From what i have read the doctors diagnose one with either cmv or hhv6 active infection which ever virus he wants to treat. Theres no need to mention cfs??
 

maddietod

Senior Member
Messages
2,856
Many of the anti-virals are cheap. A 90 day supply of acyclovir costs $10 at Walmart.

The biggie is valcyte, which is prohibitively expensive without insurance coverage. Some insurance plans will only cover it for a short period, others will not cover it for a cfs diagnosis. Very difficult to get information on valcyte coverage.

Thanks for this. I think Dr Rey uses valcyte for CMV, which I don't have. I qualify for a huge government subsidy, so it looks like my medical expenses will go down by 2/3 no matter what meds Dr. Rey puts me on.