Show Up For Samar Who Needs Necessary Medication

Hello all,

Our dear friend Samar needs medication that significantly shifts her quality of life as a chronically ill and disabled person of color. Samar has been a supportive and conscious community member and source of support for years as a licensed professional counselor specializing in sex-positive, kink and poly knowledgeable therapy. Below you can find more about her health story and how insurance issues have got her in a bind regarding maintaining her wellness. Samar's story is broken down into sections with details pertaining to money and numbers toward the bottom. Please consider donating and passing on the word to help Samar pay for her medication and help her sustain in the current landscape.

Thank you,

Scout

 

I like sharing all the details, even if it’s TMI or has me all in my feels, due to the vulnerability of it all. To be honest, I would feel better accepting help if y’all knew how hard I am trying. Cause I am. Unfortunately, our healthcare system is broken, and what I’m doing is not sustainable… so here we are.

 

TLDR: Lupus sucks. The healthcare system in America is broken. I could have paid $0 for my much-needed medication, but (no) thanks to my insurance, I have to pay $8000 (just this year) to hit my max-out-of-pocket before my injections are covered at 100%.

 

My story… well, where do I begin?

 

My name is Samar and I’m a disabled, queer, woman of color. I’m a psychotherapist by day, and a chronically ill, super introverted “spoonie” by night.

 

If we’ve spent any real time together, you’ll quickly learn that I have a laundry list of physical ailments and disorders. At this point, I’ve truly lost count of how many pre-existing conditions I have. I read a joke somewhere about autoimmune diseases being like Pringles, “once you pop, you don’t stop” (getting sick)… hooray.

 

The History

Five years ago, I was diagnosed with Narcolepsy with Cataplexy, after struggling for 12-15 years with excessive daytime sleepiness and physical limitations that I did not understand until later to be Cataplexy (loss of muscle control, weakness, and/or temporary paralysis over heightened emotions… ironic, right?) I remember thinking how scary the diagnosis felt and thinking, “how can I manage this all on my own?”

 

And then, Lupus happened.

 

One of my providers explained to me that people’s autoimmune diseases can be triggered by:

1. Food allergies

2. Chronic infections

3. Toxic chemicals

4. Toxic metals

5. Trauma

 

Trauma has gotten me every time. It became clear as day when and why I have Lupus.

 

Do y’all remember when Justice Kennedy announced he would retiring at the end of the summer in 2018? That is when folx started #jokingnotjoking about RBG never retiring, and feeling concern for the future of Roe.

 

Well, that is the same summer I watched the first season of Handmaid’s Tale. After Justice Kennedy retired and #45 nominated “I Like Beer” as Kennedy’s replacement, I made an appointment with an OB/GYN to have my tubes removed.

 

(This is related, I promise.)

 

Three months later, I was sterilized. Tubes came out, IUD stayed in, and I was sent home to discover that none of my pain meds worked. None of them.

 

Do you know what happens when you’re cut open, have two organs removed, are sewn back up, and left without any working pain meds? Trauma.

 

I knew I had an abnormally high tolerance to drugs—not uncommon for people with Narcolepsy to metabolize medication differently, but nothing gave me relief.

 

I lost 10-15 lbs in less than two weeks. My hair was falling out. I couldn’t eat, either due to persistent nausea or loss of appetite. I had (more) trouble regulating my temperature. My joints and muscles ached. My arthritis got worse, my Raynaud’s got worse, my brain fog got worse. I had very little energy—when I had very little to begin with. It took four months to recover instead of 2 weeks. It was after this surgery that I started walking with a cane (as needed), and knew *something* was wrong, but couldn’t figure out what.

 

Fast forward two years, and I received my Lupus diagnosis (and secondary Fibromyalgia). Today, I am on four different medications for treatment.

 

In the year and four months since my diagnosis, I’m still struggling, BUT for the first time, I have hope. Had hope. Still do? (This is where it gets proper messed up.)

 

Current Medication

In November 2021, I told my doctor that the two medications I was on were not enough. I was still in a lot of pain, and needed help with the inflammation, joint/muscle aches, and arthritis. She suggested adding chemotherapy, something that is also prescribed to people living with Rheumatoid Arthritis and Lupus. I was not too keen on the idea, but felt desperate enough to try it. The last week of the year, we had our follow-up. I told her I wanted to get off of it, and she suggested Benlysta (a biologic therapy, given intravenously or subcutaneously) in its place. She warned me it could be a bit of a battle with insurance to get it approved, so I needed to continue on the chemo until further notice.

 

First week of January, we started the paperwork. It was immediately denied. My doctor went above and beyond to appeal every rejection. She had multiple peer review calls. I did every lab they requested of me. We jumped through all the hoops. Meanwhile I’m in the worst daily pain I’ve been in on a daily basis.

 

Let me break that down. The pain scale I use is as follows:

0—No pain. (“I have no pain.”)

1—Minimal. (“My pain is hardly noticeable.”

2—Mild. (“I have a low level of pain. I am aware of my pain only when I pay attention to it.”)

3—Uncomfortable. (“My pain bothers me but I can ignore it most of the time.”)

4—Moderate. (“I am constantly aware of my pain but I can continue most activities.”)

5—Distracting. (“I think about my pain most of the time. I cannot do some of the activities I need to do each day because of the pain.”)

6—Distressing. (“I think about my pain most of the time. I give up many activities due to my pain.”)

7—Unmanageable. (“I am in pain all the time. It keeps me from doing most activities.”)

8—Intense. (“My pain is so severe that it is hard to think of anything else. Talking and listening are difficult.”)

9—Severe. (“My pain is all that I can think about. I can barely talk or move because of the pain.”)

10—Unable to Move. (“I am in bed and can’t move due to my pain. I need someone to take me to the emergency room to get help for my pain.”)

 

Now, pre-pandemic, my *best* days were at 3-4, but most days were 4-5, sometimes 6 on bad days.

 

Then during the pandemic, naturally, that number went up. Now my best days were at 5-6, but a lot of my days, I was at a 7. When it got really bad, I had some 8s, and even some 9-10s. (I never went to the emergency room because I imagine nothing they could offer me would actually work. Instead I’d cry fetal in bed for hours = I’d call that a 10.)

 

Around the time that I started my chemo, this is where I was at. By January, most of my days were at an 8. After telling my psychiatrist how hard my days had become, I messaged my rheumatologist crying, and asked for a referral to a pain specialist. Not sure if anything they had to offer would work, but again, I was desperate.

 

And to be honest, that experience in itself was a bit dehumanizing—having to prove to this male doctor who barely looked at me that OTC meds weren’t going to cut it. He agreed to trigger point injections, a “light” dose—but by golly, I had some relief! I went from an 8 on the scale to a 3-4 for a handful of days (!!!) before evening out at a 5-6, where I have been sitting for the last four months since.

 

Now, back to the Benlysta. After 3+ months, it was finally *approved (note the asterisks) in mid-March.

 

While I was waiting, I joined a Benlysta group on Facebook. (Honestly one of the only reasons I still have an account—there’s so much doctors don’t tell you, and I’ve learned so much from other people’s experiences and stories.) My doctor and this group both suggested I apply for Benlysta’s co-pay financial assistance program. I did, and got the full allotment of assistance: $15k/year.

 

I ordered my medication and started weekly auto-injections at home. I was told it would take a minimum of 6 weeks to see any results, but the average I had read was 6 months. Everything I had read about Benlysta was incredibly encouraging. Something like, “it took ___ months to work, but when it did, it changed my life!” I was hopeful, and all in. Plus, if the Benlysta worked, I could stop the chemo.

 

After 9 weeks, I had more energy. I had more stamina. My pain wasn’t much better, but it wasn’t worse either. (I blame the heat for the pain I’m currently in—no amount of medication would counter the heat from hell in Texas right now.)

 

I went to refill my medication for the fourth time, and got an email saying my copay assistance was denied. I spent the next few hours on the phone going back and forth between Oscar, CVS Caremark, and Benlysta. The email that said it was “denied” really meant “your assistance ran out.” In order to get my refill, I had to pay $1574.52.

 

And this is the part where I got screwed. (Non-consensually, might I add.)

 

The Numbers

I learned my injections were $4143.63/month. My co-pay assistance was $15,000/year. My insurance *approved* my medication, but they failed to mention “approved” is not the same as “covered.”

 

Three months of injections added up to $12,430.89 of the $15,000 aid I received.

That left only $2569.11 for my next refill, leaving a balance of $1574.52.

 

In the middle of these phone calls, I posted on the Benlysta group on Facebook, wondering if anyone else had found themselves in the same pickle. Of course, I was not alone. It was there that I had discovered what I should have done.

 

The aid paid for my prescription directly which also meant nothing went towards my prescription deductible, which is $7700. My max-out-of-pocket is $8700.

 

Now, if I had ANY indication from my insurance that they were paying $0 towards my injections that cost $4143.63/month—the same ones that took 3+ months to approve, mind you—I would have had to front two months worth of my injections, but in the end, paid $0 for the whole year.

 

Let me explain.

 

Two months of my injections upfront would have cost me $8287.26. With my prescription deductible at $7700 and my max-out-of-pocket at $8700, I only had $412.74 left on the latter, which I would have met by my third refill ($12,430.89) or a handful of doctors appointments. Either way, I would have been set for the year and then my Benlysta would have been covered at 100%. The Benlysta co-pay assistance program would have reimbursed me the money I paid upfront, leaving me paying $0 in the end—AND without maxing out my aid.

 

(Several people in the Benlysta group said they do this every year, and I confirmed with the Benlysta Co-Pay Assistance program that they do, in fact, offer direct reimbursements to the patient.)

 

Instead, because American healthcare is a scam, I had no idea my insurance paid $0 towards my prescription. Of course, my aid ran out, and I have put zero towards my deductible in the way this played out. I emailed my insurance consultant in a panic, and he was an angel who got me in touch with a “Health and Welfare Concierge” at Oscar. She explained what I need to do for the rest of the year:

 

If I can, I need to pay for my next three refills myself. $1574.52 for the remaining balance of my next refill.

$4143.63 for the following refill.

and then I only have $2269.51 before hitting my max-out-of-pocket deductible, in which case the rest of the year is covered 100%.

 

That’s $7987.66 total (as I have already paid $712.34 towards the $8700… most of my providers don’t take insurance which is why that number isn’t higher).

 

$7987.66 is not sustainable. I don’t have that kind of money laying around, and my taking care of myself is its own full-time job. In March, I spent over $3k on health-related appointments, which is more than my rent. The amount of money, time, and energy that goes into simply *surviving* as a disabled, immunocompromised, and burnt out human and therapist is… a lot. To give you an idea of how much work it is, this is everything I do that keeps me at a 5-6 on the pain scale:

 

I manage my chronic pain with body work from a massage therapist (recently switching back to weekly), a chiropractor (switched to biweekly after attending 1-3/week for several months), and acupuncture/cupping (weekly). I started homeopathy in April and more recently I started yoga therapy for trauma (which supports restored vagal tone and healthy nervous system responses through specialized somatic movements, visual orienting, and breathing techniques). I was doing EMDR, but put it on hold when I started chemo—it’s something I hope to start again, soon, when I have more energy. (Haaa.) As I briefly mentioned earlier, my body doesn’t metabolize medications or supplements normally, so I am deficient in many vitamins and nutrients with no relief, no matter how many pills I take or IV therapy I do.

 

This is merely a glimpse of my daily struggles, not taking into account other disorders, diseases, deficiencies, etc.

 

I feel incredibly vulnerable sharing all of this.

I feel incredibly embarrassed to accept my dear friend’s offer to start this GoFundMe for me.

I feel incredibly privileged in a lot of ways - being able to put as much time and money into my care. It’s not like I have a choice, but I am grateful to have the means to be able to, in so many ways, still.

 

I am trying to be okay with asking and accepting help. Knowing that people would want that for me, as much as I would want that for them.

 

Whew.

 

I know that was a lot. If you’ve made it to the end of this novel, thank you. I appreciate your time and energy.

 

Next year, I know what to do to avoid this financial mess and get my medication for $0, after reimbursement. As for this year, I learned a very expensive lesson.

 

Thank you for reading and considering donation.