The COVID-19 pandemic ushered in a new challenge for those battling breast cancer today. This hydra-headed challenge manifests across issues relating to equity, advocacy, and access to care for cancer patients as the pandemic rages.
Chemotherapy – for all its effectiveness in combating cancer – unfortunately, suppresses the immunity of the patient. Generally designed to inhibit the aggressive growth of cancerous cells, chemotherapy could eventually handicap the patient's immune response, as seen in its impact on their red and white blood cell count.
You will, therefore, agree that cancer patients face even higher risks from the pandemic. Sad, isn't it?
Well, the reality is that the pandemic has sparked a structural overhaul not only in society but also in the healthcare system. Many treatment algorithms and previously established medical traditions are helplessly morphing in adaptation to the disruptions triggered by the virus.
It is definitely not heartwarming to see the swathes of COVID patients strewn across hospitals today, extensively stressing the system. Come on, there was no way cancer patients weren't going to be affected.
With an exponentially hectic schedule, healthcare providers have been forced to reschedule critical treatment procedures for patients like surgery, sometimes repeatedly. You guessed right! This comes with an alarming possibility of derailing the treatment's progression.
Undoubtedly, such a scenario can be traumatic for breast cancer patients who, having undergone chemotherapy (with its accompanying nightmares like quick fatigue, nausea, and pain), now lack the typical stability and agility we are lavished with as totally healthy individuals.
In some cases, patients have been put on pills to compensate for the delays in surgery (possibly due to the inappropriateness or endangering nature of the prevailing hospital environment for such treatments), helping the patients shrink their tumors in the short term. In truth, there isn't much this can do.
The scale of preference has greatly changed – mostly adversely for cancer patients. You would have noticed how the COVID has jiggled prioritization procedure for specific treatments and screening.
Effectively, access to quality health care for cancer patients has been severely threatened. Not the best of news for 2020, I suppose.
There is even more to worry about. There is also the financial component of securing vital cancer treatment when you need it. Here, oral parity plays a huge role. The manner of administering a drug largely determines its affordability.
The coronavirus storm has forced some patients to pay more to obtain oral medications from their local pharmacies due to the hospital's relative inaccessibility and scarcity of in-person consultancy from their physicians.
These aggravated costs can be biting, particularly for patients of color in underserved communities, facing a fierce economic war of survival.
All these evils gang up to pump the comorbidities which we have seen painfully seen inflated in face of the pandemic.
But guess what? Amidst this apparent flood of gloom for cancer patients, there is equally an enormous opportunity to stay healthy and happy, easily securing the medication and care you need.
Admittedly, this is more practical than Utopian – in that you, society, and other healthcare stakeholders have a significant role to play in its realization. How about we explore how you can maximize this glimmer of hope, living your best life as a cancer patient or survivor?
Play a bigger role in the process
Would you be flattered if I tell you that you are a major stakeholder in the American healthcare system? Truth is you are! Rather than justwaiting meekly for the results, it is crucial to boldly jump in and partake in the process determining the results.
For instance, there are loads of emerging technologies and therapies for cancer patients and survivors. According to Dr. Keith Crawford, director at PHEN (Prostate Health Education Network), Black men and women must tap into this, and massively partake in the clinical trials.
It is more imperative for Black women to champion this and get their hands on the steering wheels driving their destinies. A peep at black cancer statistics could get your heart leaping in fright.
Do you know that black women are 40% likelier to die from breast cancer than white women? This is even more prevalent for American states like North Carolina, Arkansas, Georgia, and Tennessee.
Indeed, there is a higher possibility of Black women (compared to white women) getting triple-negative breast. This is the infamous breast cancer known for its aggression and notoriety for resurging even after treatment.
Today, the need has never been higher for localized medicine. Rather than the generic approach that has plagued us with mediocre results for decades, it is more urgent now to have medications personalized to a specific genome. How can we achieve this if we know sparsely about our genetic identity as Black cancer patients or survivors?
Therefore, Black people must take a massive chunk of responsibility in the formulation of these emerging technologies and therapies. More than just piling up the numbers for the clinical trial, more Black people should be allowed into critical decision positions involving clinical trial designs and securing posts in these trials' advisory boards.
Drive awareness in your community
Do you know the biggest lie of 2020? It is that your voice doesn't count as a Black cancer patient or survivor. Black breast cancer patients feel their position -- as structurally dictated by society -- is on the sidelines as idle spectators watching out how their destinies play out. NO!
According to Nanny Reece, an MBC Angel advocate and certified medical assistant who was diagnosed in 2017 with Metastatic Breast Cancer (MBC), "Black breast cancer patients feel like they don't have a voice because of who they are. Because, being a black woman, they feel like they're not given the same chances, they feel like they're not being heard."
Well, you probably don't have a voice only because you think you don't have a voice! In reality, you do, and not just any meek voice, but a very powerful voice that can engineer massive changes for the lives of fellow breast cancer patients.
It is essential to drive awareness in your local circles and communities. Bond together with Black cancer patients and form fraternities to amplify the social audibility of your voice so that society and the authorities can hear you guys better.
There is a wealth of platforms to use in 2020 in "screaming" your opinion out loud. You can write a blog, do a podcast, and even hold physical movements in your communities to magnify your visibility.
More also, who said social media was just for cat memes and GIFs??? Social media platforms like Facebook, Instagram, and (even the recent craze in town) Tiktok are great platforms for advocacy for Black cancer patients.
Wait, lending your voice isn't just ceremonial. You have to be aware of your rightful prominence as a critical stakeholder, just like healthcare providers and insurance companies.
According to Maimah Karmo, a courageous 14-year cancer survivor of triple-negative breast cancer, "Black cancer patients and survivors must know how to use their voice and put them at the table as equal partners with their providers, insurers, scientists, and researchers. And not just ask to be there but know they're right to be at the table."
Putting her money where her mouth is, Maimah would go on to found the Tigerlily Foundation, a national breast cancer foundation dedicated to providing optimal education for cancer patients, driving awareness via advocacy and hands-on support.
Dedicate some time to study and be bold
Knowledge on its own is medicinal. You must educate yourself reasonably on your health condition. It helps to spend a bit of time analyzing your report. Invest effort in studying the terminologies to get more thoroughly acquainted with what you have been diagnosed with.
Rather than just forsaking everything to the supposedly infinite authority of the doctor, you should know fairly enough to have meaningful dialogues with your healthcare providers. This way, there will be a fluid flow of communication and trust both ways as opposed to the one-way flow of orders from the doctor to you.
If you have any reservations about your treatment, be bold to voice it out – and on time. Don't be diplomatic at the expense of your life!
It is vital to air your perspective when you have questions, doubts, or symptoms contradicting what the doctor is saying.
According to Monica Gray, a breast surgical oncologist and medical director of the Cancer Program at Grand View Health in Sellersville, Pennsylvania, "young women are confronted with severe challenges when procuring resources for diagnosis."
This is commonly seen in breast-related cases where physicians brush these patients off with the likes of "Oh, it's fibrocystic changes…Oh, it's a cyst. Oh, it's... whatever. You're too young for XYZ.'"
And these patients either docilely or nice cave in, shelving their deep yearnings. One thing to point out here is that instead of readily kowtowing to your physician at the slightest disposition, you have to be aware of your "royalty" in that you hired this physician.
Your world isn't mandatorily tied to that one physician – despite his intimidating portfolio of success or hefty bag of degrees. If you are not fine with him (or communication is rickety), drop him and get another one. After all, is there a better expert than you living with the disease?
Oh yes, society and institutions have their role to play too
If you said you couldn't do it all, I wouldn't blame you much. The big guys have a crucial role as well to play in improving equity, advocacy, and access to care for breast cancer patients today. One crucial way is by the integration of Black breast cancer patients or survivors indecisive leadership positions.
This will give these women the crucial platform to directly influence policy ideation, as related to breast cancer. This way, there will be a larger (and more effective) representation of the Black breast cancer community in the vital conversations that shape drug policy, insurance packages, and overall healthcare infrastructure relating to the Black breast cancer community.
We will enjoy incredible progress if only a slice of the attention society (and the big manufacturers) places on beauty products are transferred to the Black breast cancer community. Rather than the hyper-sexualized marketing women of color are involved in, would it hurt if that energy was more meaningfully diverted into marketing healthcare information?
Conclusively, given the heaps of billions insurance companies and big pharmaceuticals make, it would yield astronomical development for Black women if a fair fraction of these billions were invested in empowering African-American women researchers and scientists, as well as mentoring Black people in underserved communities to grow and take up crucial roles in advancing healthcare for people of color. With all this put in place, breast cancer would be far less of the death sentence it is today for Black people.