AGE SHOULD NOT BE A REQUIREMENT FOR MEDICALLY NECESSARY CANCER SCREENINGS! HELP ME TELL INSURANCE COMPANIES TO CHANGE THEIR POLICIES! 

Most insurance companies consider age a factor in determining eligibility for things like a mammogram, ultrasound, MRI, or other screenings (that may require a pre-authorization). New information and research for many types of cancers have demonstrated that there may not be an age factor to take into consideration, yet insurance companies are still using it as a determining factor for potential risk.  

As I write this petition, advocating not only for myself, but also others, I still do not have a resolution.

It has been 7 days since I was denied my preauthorization for, what could potentially be, a lifesaving MRI.

7 days since my doctor completed a peer-to-peer review (an appeal of the denial) and was still told “no”.  

7 days since I’ve emailed 6 executives, leaders, and the insurance company’s CEO.

7 days since I faxed an appeal.

7 days since they assigned my case to an executive consultant for review.

7 days for any potential cancer to continue to grow and spread.

7 days of additional stress and worry for not only me but my husband, my 3 children, my friends and family.

7 days further away from any answers or resolution.

7 days I can never get back with no resolution in sight.

 

This is my story and timeline.  

I am a 37 year old female with 3 children. 

Mid - Nov 2022 I noticed a change in my left breast (L B). I had a rash that itched and was spreading. I had pain that was shooting down from my arm pit through my L nipple. It continued for days. The pain would, at times be severe, and others just be a dull ache in the background of my day. It woke me up from sleeping a few times because when I rolled over onto my L side, the pain was so sharp and severe it startled me.

Dec 5th 2022 - I saw my primary care doctor under insurance "A". My primary care doctor was amazing. She prescribed antibiotics to rule out mastitis but wasted no time in referring me for a mammogram and ultrasound. We discussed briefly that there is a rare form of breast cancer that does not have a lump but instead has a itchy rash that can spread and pain in the breast. Wanting to rule this out, we proceeded to submit a prior authorization request to my insurance company.

*pause timeline for background information*

Someone might be wondering: "why would we be suspecting cancer if there's no lump but just a rash with L B pain?" Have you ever heard of Inflammatory Breast Carcinoma? For 98% of us reading this, the answer is likely "no". Inflammatory Breast Carcinoma or Inflammatory Breast Cancer (IBC for short) is a rare breast cancer that is aggressive.

• It primarily (but not exclusively) targets women under age 40 & shows higher rates in women of color.
• It can target someone who does not have a family history of breast cancer.
• Anywhere between 40-70% of people with IBC did not (initially) have a lump that could be detected with a mammogram and/or ultrasound. It has even gone undetected through MRI.
• It does not show up in bloodwork.
• It does not run-in families.
• The most accurate test available is a biopsy of the skin and tissue.
• IBC is aggressive. By the time the rash is present (usually the very first symptom) it is already in stage III. From there it can spread to bones, lungs, brain, etc, in a matter of weeks or just a few months, reaching stage IV.

Once the rash is present time is of the essence and quick medical intervention is needed. 

The next logical question you might be wondering is: "why bother with the mammogram, ultrasound, and/or MRI? Why not just skip straight to the biopsy since that's the only thing that can confirm for sure?" Great question! Most insurance companies require findings on a mammogram and/or ultrasound in order to get an MRI and then a biopsy can be requested. 

*unpause* 

Dec 13, 2022 - I have a mammogram and ultrasound. Radiologist gives me results in real time and says "good luck treating your topical rash. There's no lump or thickening of your skin so there is 100% no cancer". When I questioned him "why do you think I have pain in my L B and this rash?" His response "Sometimes we just don't know. Some women go on the internet and google things and get themselves worked up thinking they have something, like IBC, when they don't".  This is incorrect information and knowing there’s no point in arguing, since it’s typical for IBC not to appear on an ultrasound and/or mammogram, I leave his office. I felt mad, I felt unheard. From the parking lot of the office, I emailed my doctor and asked if we could skip straight to the biopsy. She was only able to submit for the MRI next. Since it requires a preauthorization from the insurance company, information is submitted from my Dr's office for the MRI request. 

Dec 28, 2022 - Insurance company "A" grants the preauthorization necessary to schedule my MRI. I call and schedule it for 8:45am on 1/13/23. 

Jan 1, 2023 - To try and save money I enrolled in a cheaper plan at work and my insurance switched from "A" to "B" effective Jan 1, 2023. I thought the coverage would be the same but that the network was smaller and therefore I would not experience any substantial changes to my coverage. 

Jan 4, 2023 - I call my Dr. office and inform them of my new insurance information. They submit for a new preauthorization of the MRI through insurance "B". 

Jan 9, 2023 - I call to check the status of the MRI request. There’s confusion on whether it was received. After some back and forth with my primary care I confirm that it’s been sent and must be in process with the insurance company.

Jan 10, 2023 - I call to check again. I’m told it’s denied pending additional information from my doctor. I call my Dr. and they submit additional information that evening.

Jan 11, 2023 - I call in the morning and I’m told that the information was received. At that time, it was being reviewed.

Jan 12, 2023 - I call again and I'm told it's denied. The reason provided is because I am not considered high risk because I'm under age 45. In order to be high risk and under 45 I must prove that 2 direct family members have been diagnosed with ovarian and/or breast cancer.  With “direct” being defined as a parent, sibling, and/or child. I explain that family history and age do not feel relevant to the type of cancer I’m concerned about. I explain that IBC does not run-in families and primary targets those under age 45. Meeting a dead end with that explanation I explain that my mother had a total hysterectomy because she had pre-cancerous cells along with some other complications. I'm told that her hysterectomy does not qualify because "pre-cancerous is not cancerous”. I explain that I have no daughters, no sisters, and now, after my mother’s surgery, no ovaries in my direct family. Statistically my chances of proving 2 direct family members as having ovarian cancer would be 0% and breast cancer would be less than 1%. I explain that I shouldn’t be penalized because my family is small. Even if it extended to a larger family group, I have two female cousins and no blood related aunts. There are not enough females in my family to prove any connection. I’m told that the only way to get my preauthorization for a potentially life saving procedure would be to have my Dr. call a number (which they provided) and schedule a Peer-to-Peer review between my primary care doctor and the doctor acting on insurance company “B”’s behalf. We conference in my primary care’s office, they immediately agree to schedule the peer-to-peer. We end the call.

 

Jan 12, 2023 continued – a couple of hours pass and I receive a call from my doctor. She was unsuccessful in the peer to peer review. She also explained to their physician that IBC does not require a family history, she provided more medical information regarding my history, she said “he was adamant that it was a firm denial”.

 

Jan 12, 2023 after completing my work day I call yet again regarding my preauthorization. I escalate the call to a supervisor. I explain the situation again. I explain that my Dr. provided all the same information I have previously provided. I’m told that after the peer-to-peer review there is nothing I can do via phone to escalate or appeal their decision. I ask if the supervisor will pull the recorded call between my Dr. and their physician to confirm that my doctor did in-fact provide enough information for the denial to be overturned. After a lengthy hold, she returns to the call to inform me that the patient cannot request that the call be reviewed. I’m emailed a form to submit for an appeal. I log back into work and contact HR and submit a complaint about insurance company “B” and the difference between insurance company “A” and “B”. Unfortunately, since it’s not open enrollment, I cannot switch back to insurance “A”. I’m stuck with insurance “B” until at least Jan 2024.

 

Jan 12, 2023 after dinner and my kids go to bed – I sit down and google executives at insurance company “B”. I find their CEO and 6 other leaders in their company and email them all directly. I explain the situation and that their strict criteria are omitting an important population of potential breast cancer patients. I explain everything I can to the best of my ability and knowledge. After completing the email to the leaders, I fax my completed appeal to insurance company “B” and wait.

Jan 13, 2023 - I miss my MRI appointment.

 

Jan 19, 2023 – Before work & during a lunch break, I draft this petition. In the last 7 days I have made many calls, received several calls, received a paper copy through the mail of my MRI denial, researched more about cancer, made dinner for my family, worked, watched a movie, and done my best to tell myself that everything will be ok, although I still do not have any light at the end of the tunnel. My symptoms persist. My doctor continues to seek additional avenues for me to go down in order to obtain preauthorization for a procedure that I need. After work I emailed my state senator seeking assistance. I am still actively researching how our state Insurance Commissioner may be able to help as well. 

I’m not a statistical expert but it would seem logical that if they (the insurance companies) are allowing easier access to cancer screenings for people over the age of 45 than you would find a connection/correlation between cancer and those over age 45. If, perhaps, we remove age as a barrier for screenings, we may detect cancers earlier (not for IBC, but for others!) and save lives. 

I don’t argue or disagree that maybe at one time there really was a connection between age and cancer but there are SO many factors now that can influence who, what type, and when someone may develop cancer. Changes in our environment can influence our health, things like how our food is prepared, what it’s prepared in, chemicals on our clothes, what’s in our air, etc. With each passing year our lifestyles, habits, diets, and environments change dramatically. Those factors coupled with how little we know about cancer and what influences it means that criteria like this can quickly become outdated.

This is not isolated to just breast cancer. It can impact men with testicular cancer concerns as well. Most insurance companies require men under 45 to provide two direct family members with prostate and/or testicular cancer diagnoses. A male could be in a similar situation as me, what if he had a mother, father, two sisters, and 3 daughters? How would he prove that he needs medical attention, regardless of it running in families or not.

What of those who are adopted? They may not even know it as their birth certificate was amended and their records are sealed by the courts.

What if someone is estranged from their family? How will they obtain any necessary information in order to move forward in this process?

What about relatives who do not share their medical issues with other family members. We may not even know who in our family has had what.

What if a parent someone grew up with wasn’t their biological parent despite being told their entire life that they are?

Although these scenarios are not the majority, they could describe any number of us. We have friends, family, co-workers, who could be impacted by the strict, outdated guidelines regarding medically necessary cancer screenings. 

My primary care doctor is advocating for me. She has called and attempted to appeal through their peer-to-peer process. She has provided documentation. I have advocated for myself. I have researched and sent information to people in position’s of authority from credible sources.

It should not be like this. We need to start being heard as a collective, unified, voice. Sign this position. Let your voice be heard. Let’s tell insurance companies that we have a right to medically necessary care.

Sign this petition.

Share this petition. 

Together our voice can be heard.