California Medical Insurance Plans That Cover Actemra

Hi @redboat
All these things vary so from state to state. Luckily we are still on my husband's retirement BC/BS Medicare Advantage through one of the Indiana Steel Mills, for which we still pay a premium though not through the roof.

Can you have a conversation with a Kaiser doctor to see what the likelihood is he could get an override? It is amazing what they can do if they put in the effort, but medicine has changed so much in the States.

When I got GCA and was almost immediately put on Actemra in 2019, it was $9000 per month and now it is $5000. The Good News....a friend of mine who was a social worker (I was in a total brain fog from Prednisone) offered her help to me. She gathered all my prescription costs, doctors, hospitals, etc. My husband and I were legally separated at the time, and he paid me alimony, I like to think of it as a subsidy. We went to the Department of Health and Human Resources, and she outlined my expenses, and I qualified for 'extra help' due to 'catastrophic medical bills'...their term. I pay a $45 co-pay on January's delivery of $5K and nothing thereafter. Most of my prescription balances are picked up by 'extra help'....I had investments and interest in a piece of property too. They appeared to really aim to help and didn't want to put me in the poor house. I'm sure it is called something different in California~but it doesn't hurt to inquire. My best to you!💞

If your current employer-paid health insurance covers Actemra, then you should be able to continue it under COBRA.
https://www.dol.gov/general/topic/health-plans/cobra
The cost of paying for your own health insurance premiums might be prohibitive but COBRA might be an option until you become Medicare eligible.

Retiring before being Medicare eligible is complicated. Are you thinking about retiring because of disability? Social Security disability is even more complicated. A social worker might be able to help. I always contacted the hospital based social worker when people were hospitalized and were suddenly forced to retire for medical reasons.

It might be a good time to begin studying how Medicare works.
https://www.hhs.gov/answers/medicare-and-medicaid/who-is-eligible-for-medicare/index.html

@redboat https://rheumatology.org/patient-blog/how-prior-authorization-affects-individuals-with-rheumatic-disease. >>> eek ! if you keep digging in here , there is link link to a bill that passed the house : " This bill establishes several requirements and standards relating to prior authorization processes under Medicare Advantage (MA) plans." PLEASE do your research as you near 65 yr old - there are MANY disadvantages of Medicare "advantage" plans -- and you'll need to pick your part D carefully too.

In editing, i have lost some sentences so will try to fix:

i attached a list of the state chapters of Rhematology Assoc or Colleges . maybe i attached too many links - but there is one in CA.

@redboat and this survey :

This is a great opportunity for voices to be heard!!💞

My rheumatologist at Kaiser Permanente Northern California (KPNC) gave me the following enlightening information:

1. If I rejoin KPNC privately after retiring from my employer, I will be given the same rheumatologist and primary care physician that I previously had.

2. Since my rheumatologist has already been treating me with Actemra (aka Tocilizumab), there would be no question about continuing this treatment. It would be entirely routine.

3. Even through Actemra is not on the KPNC "formulary" (ie list of Kaiser insurance-covered drugs), it would be deemed "medically necessary" by any rheumatologist at KPNC. Actemra would therefore would be covered by my KPNC insurance due to this "exception".

4. Since Actemra would be deemed "medically necessary", my insurance coverage, and my personal costs, would be consistent with any drug on the KPNC formulary list.

5. No other authority or approval is required for Actemra to be covered. Coverage only requires that the treating physician check a box in an online form confirming that Actemra is "medically necessary". This is done routinely.

The answers I received from KPNC Member Services did not entirely agree with this. They implied that getting a doctor to prescribe Actemra, even though I am currently being treated with it, might be difficult. Further, they seemed to imply that even if my doctor submitted a new request for me to be treated with Actemra, that request might be denied.

My rheumatologist strongly disagreed with KPNC Member Services on these issues. I decided to trust him.

My experience with member benefits with KPNC is that they know less than medical specialists when it comes to medical necessity regarding medications, etc. not on the Kaiser formulary or FDA approved. I was denied serum tears for a severe eye condition prior to my PMR diagnosis although Kaisers Regional Corneal Specialist said it was covered. We persisted and I’m now receiving Vital Tears at no cost made from my blood because it’s a blood product not a medication.

In January I had onset PMR following a Shingles vaccine.
The corneal specialist said there was no inflammation in my eyes relieving fears of GCA. In May, my vision declined and the same specialist noted inflammation in both eyes but from allergies. This is being treated with prednisone drops along with my oral doses for PMR. Very scary. I return for a checkup next Thursday. With fingers crossed I pray for good news.

My rheumatologist said my temporal artery pulse is good and inflammatory markers are down so not GCA. I’m approaching 5mg of prednisone hoping my adrenal gland will function and I can smoothly finish taper in 5 months.

I used autologous serum eye drops (ASEDs) for about 2 years. They are supposed to have ingredients that artificial tears just can’t replicate and promote healthy growth and healing of the cornea. I was somewhat grossed out by putting blood serum in my eye.

My ophthalmologist lectured me about the consequences it I didn't do those drops. She said the drops were absolutely essential for my condition.

I had a neurotrophic corneal defect as a result of damage to my trigeminal nerve.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3964170/#:~:text=Neurotrophic%20keratitis%20(NK)%20is%20a%20rare%20degenerative%20corneal%20disease%20caused,ulceration%2C%20melting%2C%20and%20perforation.&text=The%20hallmark%20of%20NK%20is%20a%20decrease%20or%20absence%20of%20corneal%20sensation.
I was taking prednisone at the time which made the problem even worse because prednisone doesn't promote healing. My ophthalmologist was saying I could have a corneal meltdown which would cause an eye perforation. I don't know how I managed to escape that predicament. My eye healed.

I’m so glad your eye healed. I was also grossed out at the thought of using a blood product. My condition was diagnosed as epithelial basement membrane dystrophy disease. Unfortunately not until after cataract surgery which placed the new lens over cysts and irregular eye surface from the disease so I will never have optimal corrected vision with glasses. My vision is worse than before surgery.

Without serum tears, treatment consisted of manual debridement of epithelial irregularities and cysts. A very painful procedure which would heal with difficulty now that I’m on prednisone.

My fatigue and sleeping whenever I’m not engaged in an activity is probably a combination of PMR, long term use of prednisone, severe discomfort from my eyes and/or depression. My body has created a perfect storm. I went from an active, youthful 85 to a near basket case. I’m optimistic that I will regain some quality of life back before morbidities from PMR or prednisone overtake me. This forum has been a source of information and hope.