Insurance Frustrations

[MaineRottweilers]

Hey everyone,

I'm dealing with a bit of a blow today. I opened a letter from Aetna that denies coverage for both Herceptin and Perjeta. I spent two hours on the phone with multiple departments and got no where with them.

After covering them for nearly two years, these drug are no longer covered by my plan. I am starting an appeal but my next treatment in on August 8th. Seriously? My plan can just change midstream like that? My premium didn't change.

Has anyone else had something like this happen? We all know how important H&P are to us. I checked and Kadcyla is not covered either. So how is a MBC with HER2+++ disease to live if insurance doesn't cover these pharmaceuticals? I'm feeling totally frustrated and just a little bit defeated. I have to muster up some energy to fight Aetna but I really don't know where to start.

[lkc Gumby]

Hi Tracy, sorry you have to deal with this. Honestly having to fight with insuranc companies over denied needed care makes my blood boil. All insurance companiies have medical directors for different medical conditions. Ask .. no demand to talk to the oncology head for your area and plead your case.
As a subscriber you have the right to appeal directly to that person.
good luck!

[jacqueline1102]

Hi Tracy,

Call your cancer center immediately. Your oncology team (doc and social worker) will get on the phone to the Aetna drones. I have known many an oncologist who will fight for their patients.

Goodluck

[Kathy T]

Hi Tracy, I have Aetna and they have been covering Herceptin and Perjeta for me the past 4 years. I hope this is not a new policy.
Kathy T

[Kkmom]

Tracy,
I am sorry you are having to deal with this stupid game the insurance companies like to play. I work in a doctor's office. This is what you do - Contact your doctor's office and find out if they have received the same documentation you have for the coverage denial. If so, in the documentation, the may direct your doctor to do a prior authorization for the prejeta and herceptin. Otherwise, they may ask for a peer to peer consult - between your doctor and a doctor on staff at Aetna (which when you think about it, is a total insult). Then the next step is the total appeal process. Whatever you have to do, keep pushing them - in my experience the wheel that squeaks the loudest gets the grease. Don't stop till you get what is rightfully your right to health coverage. Sorry if I sound too militant.
Pam P. S. - If I remember correctly there is plenty of assistance to reduce the cost for herceptin and perjeta - and it doesn't matter what your household income is - At your doctor's office, they may have a social worker on staff and I found they could be very helpful and informative.

[donocco]

The suggestions Ive read all are excellent. Let me add one more aggressive. It is beyond moraity and sickness thathealthinsurance companies can practice legal murder. Since the legal system protects them you have to go around it. If necessary, contact the local news agency and see if your situation will be discussed on TV. Its not a question of shaming them as they are beyond feeling any shame. Bad publicity might hurt their incomes and this is something that they will respond to

Paul

[Paula O]

I'm so sorry you are going through this frustration and the scary scenereo of an insurgence company denying coverage of Herceptin and Perjeta, Tracy. Yikes! I hope you can get a hold of the right people pronto who can resolve this quickly for you and that there is no delay in your August 8th treatment. Please keep us posted.
Paula

[sarah]

Traci, this is shameful and morally wrong. I hope you have someone to fight for you.
hugs and love
sarah

[Catherine]

Tracy, no one deserves this anguish and frustration. I hope you have someone close to you to help you make these calls. Thank goodness the sisters here have some great advice. I learn from this site every time I visit. I am hoping and praying that your oncology office will go to bat for you. How about the insurance commissioner of your state? Keep a good log of everyone you talke to in case you need to sue Aetna later. Love and support coming your way. We are all behind you❤️

[thinkpositive]

Tracy,

I feel for you. I have Aetna insurance also. I had no problems getting both drugs approved although I only received them for a year. This is the standard of care for non stage 4 cancer. What is the reasoning for them denying coverage? It seems that the standard of care for stage 4 is that both drugs be given indefinitely. It certainly seems that this is a medical necessity. They need to give you a clear reason why they are refusing to pay.

I bet you will get these drugs covered. Somebody must have made a mistake. I remember getting a call from an Aetna employee (she claimed to be a nurse) early on in my diagnosis nd asking me if I was told I was "terminal". I was shocked and I had to convince this Aetna employee that I WAS NOT TERMINAL.

Good luck to you Tracy. You don't deserve this!

Take Care,
Brenda

[MaineRottweilers]

Had a talk with Genentech and am working on getting them to float me my vials until we can get this mess straightened out. Still getting no where with Aetna though my oncology office is on point with them. I have written both, Maine's Senators and both Congressman too as well as my local representative and Maine's AG. Maine's AG and my local rep are the only ones to have responded so far. They both directed me to the Insurance Commissioner. I am still frustrated. I don't understand how Aetna can adjust the formulary to preclude standard of care medications.

Thanks for all the good ideas and support. I will keep you posted.

[SoCalGal]

I just saw a study online, thru clinical trials .gov that was a generalized targeted therapy study. I cannot seem to find it - it was in the last couple of days. It was shared on FB, thru maybe?? Army of Women. It was a study of different targeted therapies, very broad based, I for sure recall the her2 arm was just herceptin and Perjeta. I'm very foggy this week, but maybe you have better googling skills? I even tried to save it, but then got distracted. Hope you can find or ask your online community if anyone recalls the study. I'll keep looking, too!

[thinkpositive]

Tracy,

I noticed on your signature that Aetna approved H&P through February 2018! So glad to read that. It just seemed completely unreasonable that they could deny treatment that is the standard of care for this type of cancer. It is so unfair that you've had to deal with this in addition to keeping yourself as healthy as possible. Stress like this isn't what the body needs.

Take care,
Brenda

[Catherine]

Did you see in today’s news that Aetna doctors admitted they approve or deny treatment plans without reading medical files. They just read the nurses notes. I think an executive resigned after admission to the government.

[Colleen]

Yes Aetna is in the news in California for doctors not reading patient files before denying or approving health care needs. I think this gives you more leverage to receive the "standard" treatment for her2+ mbc which is FDA approved! Keep at it! They do not have a legitimate leg to stand on for denying your access to "standard" care.

[Donna H]

WOW.....this is so wrong. Insurance companies shouldn't have that kind of control over our health! Especially when they don't review the documents they should be reviewing. Keep fighting for yourself!

[MaineRottweilers]

WOW! That is crazy. I was approved through February 9th. I had an infusion on 2/6 so I am expecting to gear up for battle for my next treatment. I should get info about the prior authorization this week.

No one should have to fight to get standard of care if they have coverage.

[Lucy]

Did Aetna approve continued herceptin and perjeta (I hope!)?

[MaineRottweilers]

They did until the end of my COBRA in April. I was all geared up to fight but it never transpired. Thankfully.

[Lucy]

I don't want to get too personal here but are you losing insurance this month? If so, what happens to your treatment plan?

[MaineRottweilers]

I did lose my COBRA on March 10. I did make the switch to Medicare and Supplemental. So far, the transition has been seamless but it has only been a few days. We shall see what happens as the next billing cycle approached. My Employer's health insurance was amazing, the best you can get. My max out of pocket was $2500, the monthly premium including dental and vision was around $700 (COBRA payment) and they never gave me any trouble until the end. I was a catastrophic loss on their profit margin, who could really blame them?

My treatment plan has no changed thus far. Fingers crossed.

[Lucy]

Fingers crossed that it's as smooth as it seems now! :)

[SoCalGal]

There is also patient help through Genentech if need be. xoxo

[Unclaimed]

Hello Tracy,
Does the switch to Medicare mean you'll receive your next H & P in August as planned? I think of you often. I joined this site because my MO wanted to add Perjeta to my treatment and I was unsure. I was only on Herceptin. I just had my first Perjeta treatment today. Your situation factored into my decision. What if my insurance does the same thing? I realized I shouldn't waste time fretting over should I or shouldn't I take Perjeta, because I might lose my chance to have access to Perjeta if my insurance denies it too. I'm so sorry you've had to go through all of this, but also thankful that you've shared so much. You made me quit whining and follow the treatment my MO thinks is most beneficial for me. Thank you, and I'm thinking of you 💙💙
Ana

[SoCalGal]

Ana - perjeta is a very good drug with herceptin, in my opinion. Also, I recently found this new medicine, for managing side effects of diarrhea. I asked my gastro doc and my oncologist and neither had heard of it, but it's been used for HIV patients. Anyhow my worst side effect when on H/P was terrible diarrhea, and taking Imodium had its own drawbacks, so just wanted to share this newer approach: https://www.mytesi.com

[Unclaimed]

Hello SoCalGal
Thank you for replying. I did add Perjeta to my last Herceptin infusion which was last Thursday. I had to go to the bathroom on Monday a few times more than normal, but other than that, I haven't noticed any side effects. I'm glad I added it. Insurance companies seem be too powerful, inefficient, and focused on profit rather than health care. I didn't want to be in a situation where I hesitated, and ended up missing out on something that's beneficial because the insurance decided not to cover it. What has happened to Tracy is awful. I hope her situation is resolved, and it doesn't happen to anyone else.
Thinking about you Tracy, please update when you can.

[Lucy]

Haven't heard anything in a while and wanted to check in to be sure everything was still going okay. How are things Tracy?

[dArla]

The issue for your particular situation is that you appear to be a Medicare advantage plan. That is very different than commercial insurance.

Medicare advantage plans usually pick up the 20% that Medicare leaves as patient cost share. Commercial insurance (at least in my own personal plan on choosing which I spent days) we pay premiums for what’s called a HDHP or high deductible health plan. Essentially we have a higher deductible (1000 or more) and after that has been met, then we are required to pay 20% of the providers contracted rate until our in network out of pocket maximum has been reached which can be over 10,000 dollars. That’s the in network benefit, the out of network is about 200-300% of what the in network cost share is set at which is often an astronomical figure.

I work with the AardvarkCompare travel insurance marketplace (https://www.aardvarkcompare.com/), and even I would like to see a federal option put in place that competes with private insurance. Because that is actually competition and competition drives prices down, keeps innovation at the forefront of businesses and puts more money in the working mans pocket. Right now, the innovative thinking has long taken a back seat to shareholder profit and that’s where I feel things need to change.

I love my job, and would love to continue doing it, but I do agree with the OPs point, the profit needs to be taken out of healthcare, because even us that work for insurance agencies agree that the focus needs to be put on the well being of others, not in board rooms and quarterly profit margin reports to shareholders.

[donocco]

Tracy

I was thinking about you too. I was going to send you a private "letter"
but decided not to intrude. Im glad things are going well now but Ill give you the same advice I gave you before. If the insurance company gives you future problems contact the news media. If they get negative publicity they will likely back down. I think the
words "stupid" insurance companies is very very mild. What they are are legal murderers but they get away with it because they have so much money and like it or not, money greases the legal system, not justice.

It goes way beyond individual denials. Since insurance took over medicine any kind of medicasl progress has been slowed down. Doctors don't decide medical treatment insurance employees do. Pretty soon the word doctor will be obsolete as the insurance companies are replacing doctors with nurse practioners.

Paul

[Becky]

Look at this article



https://www-m.cnn.com/2019/05/16/health/judge-proton-beam-therapy-recusal-unitedhealthcare/index.html?r=https%3A%2F%2Fwww.cnn.com%2F

[donocco]

Becky

It is a very informing article but the problem is the information is on a breast cancer board. Info like this has to be reported by major news networks day after day. Taker CNN for example. The only thing I hear from CNN day after day
is the 2016 election, the unredacted Mueller report, etc etc.

If anything CNN is part of the system. They get much of their income from the nonstop drug commercials ie Ibrance (Carla calls it her new normal.and Versenio ( Metastatic Breast cancer is relentless, but Im relentless too. and the Mesothelioma lawyers ( Mesothelioma its ALL we do.

If all the anti- aids drugs became useless because of viral resistance the media would report this day after day, with nonstop coverage of demonstrations by activists. That's fine, in fact that's the way it should be. This would continue until we had 12 new effective anti aids drugs. That's tremendous. But what about the suffering caused by cancer?

Cancer gets no such attention except to sell anti-cancer drugs and to advertise the latest Komen race for the cure. Correct me if I am wrong but the main push for the Komen races is to push mammography screenings

Paul

[Donna H]

Sadly cancer is big business. All medicine is big business.

[Lucy]

Has anyone heard from Tracy lately? She hasn't been around in a while and I'm kind of worried. She said I could look her up on Facebook but I'm not on Facebook.

[caya]

Just looked up Tracy on Facebook. Pretty sure it is the same Tracy - says she is a cancer fighter and Rottweiler enthusiast. She posted 3 hours ago.


all the best
caya

[Lucy]

I'm sure that's her. Thanks for checking and letting us know Caya! It's good to know that she's out there living her life. Given the nature of the site when someone takes time away, it can be concerning.