Michelle Vogel is vice president of patient advocacy and provider relations at CSI Pharmacy, a provider of specialized home infusion services. As a patient advocate, she is well aware of the challenges patients often face in gaining access to the medications their doctors prescribe.
Many of the medications myositis patients are prescribed, including IVIg and the newer biologics, are very expensive and only available through specialty pharmacies. Claims for coverage of these medications and even some procedures are increasingly being denied by insurance companies and drug plans.
Much of Michelle’s job is related to advocating for patients with rare and genetic disorders to ensure they have access to and reimbursement for lifesaving biotherapeutics. She has worked with TMA for many years offering advice to our members about how they can access the therapies their doctor prescribes.
In this Live Online Discussion, Michelle will respond to questions on how to navigate the challenging maze of health insurance coverage.Ask a Question
Is Rituximab covered by Medicare?Participant:
Is this medication a problem getting medicare to approve it and does this go through part B? And are there supplemental insurance companies in New York State that pick up the 20% without an issue? Just trying to plan for the near futureMichelle Vogel:
Rituximab is covered for myositis under Medicare except for
Florida, Puerto Rico and the Virgin Islands due to a local coverage
determination. It is covered under Part B of your Medicare Plan. It must be
infused at a physician infusion center or hospital outpatient infusion center.
In order to not be responsible for the 20%, you will need a secondary insurance
or supplemental. If you are going through disability, pick your policy within 6
months of receiving your Medicare and you will not be subject to underwriting
and can’t be denied for pre-existing conditions. Once that 6-month period is
over, you may have to wait until you are 65 years old to pick a supplemental
plan. If you are over 65 years old, you have 6 months to pick your plan to not
be subject to underwriting.
Rituximab manufacturer rebate?Participant:
I was told that manufacturers offer rebates for many meds such as Rituximab? Is that even with insurance and how many times can you use these rebates per year?Michelle Vogel:
This is not an easy question to answer. Most rebate
programs or copay assistance programs are for medications that have an FDA
on-label indication and Rituximab does not have an on-label indication for
Myositis. Some manufacturers do have exceptions. Each manufacturer has
different rules and if you are in a federal program, such as Medicare often you
are disqualified from these programs. To find out if you qualify for assistance
in paying for Rituxan, contact RITUXAN Access Solutions. Genentech has a
BioOncology Co-Pay Card. Patients who qualify can receive up to $25,000 in
assistance per 12-month period. They pay $5 drug co-pay or coinsurance until
the annual limit is reached. To get started call 855-692-6792 or visit
Will I be able to get on a payment plan this will wipe out the deductible in one shot!
Are the infusion centers cheaper than getting the infusion in a hospital?Michelle Vogel:
Unfortunately, high deductible plans have become a reality with
health insurance plans and many of us do not have choices of plans. If you are
receiving an infusible therapy and going to an infusion center or hospital
outpatient center, discuss payment plans and if they have any financial
assistance programs. Depending on your therapy, if it is offered in the
homecare setting and your doctor approves of you receiving it in the homecare
setting such as IVIG, that provider may have a copay/financial assistance
program or payment plan. Some plans prefer you receive your infusions in the
homecare setting or infusion center over the hospital because of cost. Also, your infusible therapies maybe covered
under major medical for certain sites of care and your prescription card for
other sites of care. Its worth exploring
to see where your therapy is covered and if you may have some flexibility.
If denied on final appeal from insurance co. for Xeljanz for DM, how do I get online from Canada or another country?Participant:
I cannot get ins. co. to approve Xeljanz for my DM. It's the only thing that's worked and I have a doctor at UCSF and one at Stanford concurring that it's necessary for my treatment. It's the only thing that's working along with IVIG, Plaquenil and 5 mg. of Prednisone. It's $4000-$4200 over the counter in the U.S. I am told that I can get from Canada.Michelle Vogel:
is the manufacturer of Xeljanz and has a Patient Assistance Program called
Pfizer RxPathways. XELSOURCE provides assistance to eligible patients who have
been prescribed Xeljanz. The number to call is 1-855-493-5526. I can’t promise
they can help, but it is worth a try.
Dear Dr. Vogel,
I am being treated by a knowlegeable neurologist in Phoenix(Dr. Levine, who has spoken at the Myositis conferences). I see him once every six months. I have SANM. However, I am moving out of state to Las Vegas, NV. Currently, I am on an advantage plan. I am not sure of finding someone in LV who is as knowledgeable as Dr. Levine. I would like to continue with him, if I determine there is no one available. What is my best and most economical insurance strategy?
Switch to a supplement on SEP, (expensive $300, plus a drug plan)
or an advantage plan PPO,
or continue with my cheap advantage plan in NV and pay out of pocket to see Dr. Levine every six months. (Can I do that?)Michelle Vogel:
can stay on a Medicare Advantage plan and I would do a PPO option. Look at the
plans and see who participates in the plans. If you are currently on a plan
that Dr. Levine participates in, you may find that same plan in NV that works
in AZ. Yes, you can always pay cash when you see doctors and they may be
willing to discount if you explain that you are paying cash. Please be aware of
the certain changes to Medicare Advantage plans starting 2019, more plans will
be instituting step therapy. Step therapy means that the plans will require
that you use the least expensive medication first to show that it fails before
they pay for a more expensive medication. If you have good records showing that
you have already failed on previous medications, you should be ok. An example
of step therapy would be to be on prednisone and fail on prednisone before you
try IVIG or rituximab.
There is talk in the news of the new healthcare law changes re-instating pre-existing conditions as a way for insurance companies to deny coverage. How likely is it that it will pass and what does that mean for those of us not yet on Medicare?Michelle Vogel:
I share your concern about the potential that insurance companies can
reinstate pre-existing conditions as away to deny coverage. Currently, there
are plans that will be allowed to do that in 2019, as well as not cover prescription
drugs, mental health, pregnancies, etc. They are considered short-term plans,
however once a person goes on one of those plans, they may not be considered
real health insurance and then they can be denied health insurance down the
road if they have a pre-existing condition if we don’t pass new legislation to
reinstate the protections that were in the Affordable Care Act. My advice is stay insured and don’t let your
insurance lapse. Medicare patients are still protected. I believe that Congress
is going to take action beginning next year to close that loop hole that opened
in the law when they weakened it last year. They may also take action against
the lawsuits in the state. Stay tuned!
Can’t afford copayParticipant:
Gamunex-C has gone up from $1700 to $19,000 a month. My copay went from $200 to $900, I can’t afford that every month. Is there help for the copay? I have commercial insurance. Do you know why the jump in cost? Thank you, Liz WebbMichelle Vogel:
I am sorry you have seen such a huge increase in cost. All brands
of IVIG have increased, but it shouldn’t have increased that much. I would
question the billing. You also have options. Check to see what brands of IVIG
are on the formulary for your insurance company? There are many different
brands of IVIG, some may be less expensive on your formulary. You can check to
see which ones are cheaper and discuss with your physician if you can tolerate
a different brand. There is one brand of IVIG that has near identical product
characteristic to Gamunex-C that is on the market and you can discuss that
option with your doctor if it is less expensive. Also, what site of care are
you receiving your IVIG in? Is the site of care in-network? Check to see if
your site of care has co-pay assistance or financial assistance programs.
Refractory rash denied for IVIGParticipant:
Hi Michelle, thank you in advance for your help. My 22 year old son was diagnosed with amyopathic dermatomyositis 12/17, after a year of misdiagnosis. All antibodies are negative. He has elevated CK and the distinctive shawl rash, heliotrope rash,gottron's papules and nailbed findings. His scans and MRI's were negative for any muscle disease. Our insurance has denied his IVIG treatment 4 times, stating he needs a muscle biopsy. His physician states the muscle biopsy isn't necessary because he has no signs/symptoms of muscle disease. Meanwhile his rash is worsening and he is becoming increasingly depressed and isolated. He is using all sun precautions, including black out curtains on his windows, high SPF, hat, and sun avoidance. How can we get his IVIG approved?
Karen SampsonMichelle Vogel:
All insurance companies require muscle biopsy for
myositis diagnosis to receive IVIG. He has the elevated CK levels and the rash
which the insurance company requires. It sounds like he has probably failed on
other therapies, which is important to get approval. I know of other patients
who just have the rash and are being treated with IVIG successfully. I have a
few recommendations. If your doctor isn’t willing to look at further treatment
options, maybe it is worth getting a second opinion. If you can travel to one
of the Myositis Centers of Excellence, it may be worthwhile. If a muscle biopsy
is necessary, they will do it. They will also know if there are other medications
available that successfully treat the rash. Finally, they have done peer-to-peers
with insurance companies to get a 6-month trial for IVIG to see if it can work
in your son’s case.
In-Network Insurance BenefitsParticipant:
Was prescribed IVIg in May & finally started in August. During this time, I had several conversations with my insurance company who assured me there was no in-network resources for IVIg, so I have been using BioRX (AKA Diplomat) who is doing a great job but out-of-network with my insurance who requires me to use CVS. On my own initiative, I found out CVS DOES have a IVIg division which is in-network for me & hope to start with them soon. Who is responsible for a smooth transition with CVS? I look forward to paying in-network out of pocket expenses I should have been paying all along. Do you agree that my insurance company or BioRX should have some responsibility for not referring to CVS at the beginning? I met James Sheets (CSI) at the TMA conference in September who stated CSI tries to find an in-network provider if available for referred patients. Thanks!!Michelle Vogel:
are right that both your insurance company and your home infusion provider
should tell who your in-network providers are. You also have the right to know
how much you will have to pay in-network vs. out-of-network. If you choose to
go with an out-of-network provider, you can ask if they have a copay assistance
program. You shouldn’t have to pay more than you would if you chose to go with
an in-network provider. I would talk to Diplomat to make sure they aren’t an in-network
provider with your insurance. You never know, they also may be a participating
provider and may be able to meet your needs. If not ask them to help transition
you to CVS.
Transitioning to MedicareParticipant:
I have necrotizing autoimmune myopathy (NAM) and IVIG has done wonders for me after other drugs failed to do anything. Right now I am covered under my husband’s very good insurance plan, but I will have to transition to Medicare in about 18 months. How difficult will it be for me to continue to receive IVIG under Medicare?Michelle Vogel:
at all. It is a covered indication. Since you are covered under your husband’s
insurance, you will need to see if you can stay under your husband’s insurance
as your secondary insurance and use Medicare as your primary insurance. Check
to see if your husband’s insurance will cover your prescription drugs. If it
does, you will just need Medicare Part A and B. If it doesn’t, you will need Part
D for your prescription drugs. If you can’t stay under your husband’s insurance,
you will need a supplemental insurance or a Medigap policy.
Is there Supplemental Insurance to help with ivig costsParticipant:
I have been diagnosed with DM for 11 years. I am currently on Medicare and I am looking for a supplemental or medigap insurance suggestion to help me with the costs of the ivig treatments I have every 4 weeks. The information I have found is very vague and confusing. Is there a service that can help me?Michelle Vogel:
Medigap or supplemental insurance, it depends on your age and often the state
you live in. If you are under 65, in
many states you only have 6 months after you are offered Medicare to pick a
supplemental insurance policy. If you don’t pick a supplemental policy within
that six month period, you have to wait until you turn 65 years old. When you
turn 65, you have 6 months to choose your Medigap plan, in order to not be
subjected to underwriting. Most people choose Plan F. Many people go to AARP’s
website. They tend to give you the best information. You can put your zipcode
in and find the different options in your area. If you are a member, you get a
discount. If you don’t have a
supplemental insurance, you can get your IVIG in the homecare setting. It is
covered under Medicare Part D.
What Medicare GAP & Part D Plans do you recommend?Participant:
In order to transfer my care to a teaching hospital in CA it appears I must re-enroll in Traditional Medicare and purchase both GAP & Part D Plans.
I am 58 with a severe, rapidly progressing case of IBM. I have only one RX, Tier 1 drug.
What Type of plan do you recommend for possible high future care & drug costs. Thank you for your time.Michelle Vogel:
pharmacy’s have computer programs that allow us to put your drugs into the
different Medicare Part D plans with Gap coverage options. I don’t feel
comfortable giving a recommendation without knowing your specific profile. If
you want to contact me to assist you, please email me at
Medicare and medicationsParticipant:
We have heard from patients who have been successfully treated with IVIg for a decade or more, but when they or their spouse retires and they change from commercial insurance to Medicare, they are unable to access this treatment anymore because it's not in the Medicare forumlary. Is there anything that can be done about this?Michelle Vogel:
used to be an issue a very long time ago for myositis, but not anymore! IVIG is
considered to be an effective treatment for Dermatomyositis, Polymyositis, Juvenile
Myositis and Necrotizing Myopathy. Medicare coverage guidelines clearly define
IVIG coverage as long as a beneficiary has had the diagnostic tests such as
muscle biopsy, MRI, EMG and elevated CK blood test. Also need to show that you
have failed on prednisone.
Use of Solaris?Participant:
Since Solaris is now approved for generalized ACHR Myasthenia Gravis, how accepting of the insurance companies and Medicare for its usage, considering the cost?Michelle Vogel:
is not indicated for any type of myositis and would not be covered for
myositis. If you have ACHR Myasthenia Gravis, it will be covered by insurance
companies and Medicare. It is very expensive and there is a copay assistance
program through the Assistance Fund that you can apply for.
Affordable Care ActParticipant:
I couldn’t afford health insurance through the Affordable Care Act so I joined a health sharing program called Liberty Healthshare. It has been great and affordable, until I needed my IVIG. Now they are telling me that it doesn’t cover long-term infusible drugs. What should I do?Michelle Vogel:
medical cost sharing or health sharing ministries aren’t health insurance plans
and not required to pay expensive medical costs. They are great for people who
go to the doctor less frequently. The biggest problem is for people who require
ongoing expensive prescriptions or maintenance prescriptions. I recommend you
relook at the Affordable Care Act plans, they are still subsidized.
Is Medicare Part D a mandatory program?Michelle Vogel:
You need to have drug coverage when you receive Medicare. Either you need to receive
it receive it through Medicare Part D or through Medicare Advantage Plan or another
insurance plan. If you don’t have drug coverage and you decline it, when you
try to receive it at a later date, you will be penalized.
Medicare coverage for biotherapeuticsParticipant:
Does Medicare and Supplemental Insurance cover biotherapeutics that are coming for sIBM & if so, which ones.Michelle Vogel:
If the FDA approves a biotherapeutic for sIBM or there is medical evidence to prove it is not experimental Medicare and insurance companies will cover the medication. If Medicare covers the therapy, your supplemental insurance has to cover it. If Medicare does not cover it, then Medicare will not cover it.
would liptor cause pain in upper arms an lower legsParticipant:
started taking lipitor about 2 yeas ago after taking pravastatin for years with no bad affects. now have pain in upper arms and lower legs which is getting worse. what should I do?Michelle Vogel:
Please contact your physician.
I've seen a recommendation for people with autoimmune illnesses to get the Shingrix vaccine, even if we're under 50. Do you have any thoughts or tips about us getting Shingrix?Michelle Vogel:
Please contact your physician to discuss your situation and also check your insurance policy to see if it covers the Shingrix vaccine. Some insurance companies are starting to cover at age 50, but not in all states.
Use of Prolia for OsteoporosisParticipant:
For the use of Prolia for osteoporosis in IBM patients, the side effects are frightening. Do you have any information on the results of IBM patients using Prolia?Michelle Vogel:
I understand your concern. I would discuss with your physician.
Coverage for PT or gym membershipParticipant:
Because the only treatment for IBM is exercise, will insurance cover the cost of ongoing physical therapy, even if "improvement" is not possible (only less decline)? What about other things that will help maintain an exercise program like a gym membership or Fitbit?Michelle Vogel:
Physical Therapy and Occupational Therapy is covered by insurance, but only a certain number of sessions depending on your insurance coverage. For people who are disabled and are seniors on Medicare, you may be eligible for gym membership through SilverSneakers. The website is www.silversneakers.com. Also, AARP overs a Fitness and Wellness Program discounts through their website.
Change of IVIg medication brandParticipant:
My doctor prescribed Gammagard for DM, but my previous infusion company stated there is a "nationwide shortage" of this & changed to Gammaplex and I was disappointed with the results. My new company stated the opposite & sends the prescribed Gammagard which seems to be more effective. Do the supplies of specific IVIg medications run short on a regular basis?Michelle Vogel:
Unfortunately, from time to time, we have shortages of different brands of IVIG. I wish I had a good answer for this problem. I can tell you that there is currently NO shortage of Gammagard. However, there is shortage of Gammaplex. If your provider can’t get you the brand you need, it may be that they don’t have a contract for that brand or they may be getting a better price for Gammaplex. If you were doing better on Gammagard and want that brand prescribed to you, insist on it! You are your best advocate and when there is availability of the product, you should be able to get it. There are plenty of providers that will work to ensure that you have access to the best product for you in the site of care you choose.
This concludes today's live discussion. We'd like to extend a special thank you to our host for taking the time to answer your questions, as well as all of our participants.Michelle Vogel:
For those having problems picking health insurance plans or need individualized attention, I am available to help. Please contact me at firstname.lastname@example.org or 202-329-8643. I am more than happy to work with you on navigating your personal insurance problem or help you during open enrollment or open season. Please don’t let your insurance lapse. We can find solutions to every problem. You are not alone. I know how overwhelming this can be. I look forward to helping you through this process.