by: Emily Walsh and Deona Hooper
In honor of Rare Disease Day, the Mesothelioma Cancer Alliance is working with Social Work Helper to spread awareness about the effect that rare diseases can have on a person and their support system and also what resources are out there to help ease some of the added strain. Rare Disease Day is an awareness campaign that was created by EURORDIS in 2008 that shares information relevant to rare diseases that affect people all over the world.
Though each individual rare disease affects a small percentage of people, 1 in every 10 Americans suffers from such a disease, making it a more prevalent issue than many would think. Why does having a rare condition differ from having a more widely known disease and what resources are there to support those who find themselves in need of help?
David vs. Goliath
When a person receives a diagnosis of a rare condition or form of cancer, such as mesothelioma, it can often be difficult to know where to begin. Doctors can provide guidance, but often those providing the initial diagnosis are not specialists in that particular area. It then falls to the patient to follow through with receiving a second opinion from a specialist, who could be located several hours away in the nearest large city or even in another state.
Once an appointment can be made, the waiting period often leads patients to research their condition online. The internet can be a blessing and a curse when pertaining to medical information. Science based and medically sound websites can provide a wealth of information, but there is also the possibility of finding false information or statistics that may seem alarming. However, there are also support groups that can be found, where patients can discuss their concerns with others who have been in their situation.
Even with support of doctors, family, and friends, receiving a rare disease diagnosis can feel insurmountable, but there are resources available that can help.
How are social workers able to help?
Being diagnosed with a rare disease or chronic health condition can be extremely taxing both physically and mentally. Many hospitals, doctor’s offices, and palliative care centers have social workers on their care teams to connect patients to information, services and resources in order to help them navigate through this difficult time. Social workers are there to help the patient and family identify barriers to treatment and achieve their overall wellness plan.
There are also oncology social workers who specifically specialize in assisting patients with a cancer diagnosis such as mesothelioma. “Oncology social workers provide information on resources, medical and insurance coverage, and how to talk to your family and the children in your lives about cancer,” Penny Damaskos, Director of the Social Work Department at Memorial Sloan Kettering Cancer Center in New York City, said to the American Society of Clinical Oncology.”
Long term care for chronic conditions not only affects the physical and mental health of the patient, but it also impacts the mental wellness of their caregivers. Social Workers provide approximately 60% of all mental health services in the United States, and engaging in individual and/or group therapy should be considered as part of the patient’s holistic wellness plan. Telemental health services maybe also be an option for patients and family members who have financial and/or transportation barriers preventing them from engaging in traditional face to face therapy.
What are some social worker resources for those who have rare diseases?
Knowing where to look for information and resources during a crisis can be overwhelming especially if Google is your only ally. Although a staff social worker is the best access to information, it may take sometime before you are connected.
Social Work Helper has created a mobile app to help individuals and families find highly recommended resources and services in their local area ranging from mental health services, low cost prescription drugs and palliative care services to food banks and other social services. Download here!
Study Shows Immune Cells Against Covid-19 Stay High in Number Six Months After Vaccination
A recent study by Johns Hopkins Medicine researchers provides evidence that CD4+ T lymphocytes — immune system cells also known as helper T cells — produced by people who received either of the two available messenger RNA (mRNA) vaccines for COVID-19 persist six months after vaccination at only slightly reduced levels from two weeks after vaccination and are at significantly higher levels than for those who are unvaccinated.
The researchers also found that the T cells they studied recognize and help protect against the delta variant of SARS-CoV-2, the virus that causes COVID-19. According to the U.S. Centers for Disease Control and Prevention, the delta variant — currently the predominant strain of SARS-CoV-2 in the United States — causes more infections and spreads faster than earlier forms of the virus.
“Previous research has suggested that humoral immune response — where the immune system circulates virus-neutralizing antibodies — can drop off at six months after vaccination, whereas our study indicates that cellular immunity — where the immune system directly attacks infected cells — remains strong,” says study senior author Joel Blankson, M.D., Ph.D., professor of medicine at the Johns Hopkins University School of Medicine. “The persistence of these vaccine-elicited T cells, along with the fact that they’re active against the delta variant, has important implications for guiding COVID vaccine development and determining the need for COVID boosters in the future.”
To reach these findings, Blankson and his colleagues obtained blood from 15 study participants (10 men and five women) at three times: prior to vaccination, between seven and14 days after their second Pfizer/BioNTech or Moderna vaccine dose, and six months after vaccination. The median age of the participants was 41 and none had evidence of prior SARS-CoV-2 infection.
CD4+ T lymphocytes get their nickname of helper T cells because they assist another type of immune system cell, the B lymphocyte (B cell), to respond to surface proteins — antigens — on viruses such as SARS-CoV-2. Activated by the CD4+ T cells, immature B cells become either plasma cells that produce antibodies to mark infected cells for disposal from the body or memory cells that “remember” the antigen’s biochemical structure for a faster response to future infections. Therefore, a CD4+ T cell response can serve as a measure of how well the immune system responds to a vaccine and yields humoral immunity.
In their study, Blankson and colleagues found that the number of helper T cells recognizing SARS-CoV-2 spike proteins was extremely low prior to vaccination — with a median of 2.7 spot-forming units (SFUs, the level of which is a measure of T cell frequency) per million peripheral blood mononuclear cells (PBMCs, identified as any blood cell with a round nucleus, including lymphocytes). Between 7 and 14 days after vaccination, the T cell frequency rose to a median of 237 SFUs per million PBMCs. At six months after vaccination, the level dropped slightly to a median of 122 SFUs per million PBMCs — a T cell frequency still significantly higher than before vaccination.
The researchers also looked six months after vaccination at the ability of CD4+ T cells to recognize spike proteins atop the SARS-CoV-2 delta variant. They discovered the number of T cells recognizing the delta variant spike protein was not significantly different from that of T cells attuned to the original virus strain’s protein.
Although the study was limited because of the small number of participants, Blankson feels it pinpoints areas that merit further research.
“The robust expansion of T cells in response to stimulation with spike proteins is certainly indicated, supporting the need for more study to show booster shots do successfully increase the frequency of SARS-CoV-2-specific T cells circulating in the blood,” says Blankson. “The added bonus is finding that this response also is likely strong for the delta variant.”
Along with Blankson, the members of the study team from Johns Hopkins Medicine are study lead author Bezawit Woldemeskel and Caroline Garliss.
This study was supported by the Johns Hopkins COVID-19 Vaccine-related Research Fund.
The authors do not have financial or conflict of interest disclosures.
Poverty, Racism and the Public Health Crisis in America
Although extreme poverty in the United States is low by global standards, the U.S. has the worst index of health and social problems as a function of income inequality. In a newly published article, Bettina Beech, clinical professor of population health in the Department of Health Systems and Population Health Sciences at the University of Houston College of Medicine and chief population health officer at UH, examines poverty and racism as factors influencing health.
“A common narrative for the relatively high prevalence of poverty among marginalized minority communities is predicated on racist notions of racial inferiority and frequent denial of the structural forms of racism and classism that have contributed to public health crises in the United States and across the globe,” Beech reports in Frontiers in Public Health. “Racism contributes to and perpetuates the economic and financial inequality that diminishes prospects for population health improvement among marginalized racial and ethnic groups. The U.S. has one of the highest rates of poverty in the developed world, but despite its collective wealth, the burden falls disproportionately on communities of color.” The goal of population health is to achieve health equity, so that every person can reach their full potential.
Though overall wealth has risen in recent years, growth in economic and financial resources has not been equally distributed. Black families in the U.S. have about one-twentieth the wealth of their white peers on average. For every dollar of wealth in white families, the corresponding wealth in Black households is five cents.
“Wealth inequality is not a function of work ethic or work hour difference between groups. Rather, the widening gap between the affluent and the poor can be linked to unjust policies and practices that favor the wealthy,” said Beech. “The impact of this form of inequality on health has come into sharp focus during the COVID-19 pandemic as the economically disadvantaged were more likely to get infected with SARS CoV-2 and die.”
A Very Old Problem
In the mid-1800’s, Dr. James McCune Smith wrote one of the earliest descriptions of racism as the cause of health inequities and ultimately health disparities in America. He explained the health of a person “was not primarily a consequence of their innate constitution, but instead reflected their intrinsic membership in groups created by a race structured society.”
Over 100 years later, the Heckler Report, the first government-sanctioned assessment of racial health disparities, was published. It noted mortality inequity was linked to six leading causes of preventable excess deaths for the Black compared to the white population (cancer, cardiovascular disease, diabetes, infant mortality, chemical dependency and homicide/unintentional injury).
It and other reports led to a more robust focus on population health over the last few decades that has included a renewed interest in the impact of racism and social factors, such as poverty, on clinical outcomes.
The Myth of Meritocracy
Beech contends that structural racism harms marginalized populations at the expense of affording greater resources, opportunities and other privileges to the dominant white society.
“Public discourse has been largely shaped by a narrative of meritocracy which is laced with ideals of opportunity without any consideration of the realities of racism and race-based inequities in structures and systems that have locked individuals, families and communities into poverty-stricken lives for generations,” she said. “Coupled with a lack of a national health program this condemns oppressed populations such as Black and Hispanic Americans, American Indians, and disproportionately non-English speaking immigrants and refugees to remain in poverty and suffer from suboptimal health.”
Keys to Improvement
The World Health Organization identified three keys to improving health at a global level that each reinforces the impact of socioeconomic factors: (1) improve the conditions of daily life; (2) tackle the inequitable distribution of power, money and resources; and (3) develop a workforce trained in and public awareness of the social determinants of health.
The report’s findings highlight the need to implement health policies to increase access to care for lower-income individuals and highlight the need to ensure such policies and associated programs are reaching those in need.
“Health care providers can directly address many of the factors crucial for closing the health disparities gap by recognizing and trying to mitigate the race-based implicit biases many physicians carry, as well as leveraging their privilege to address the elements of institutionalized racism entrenched within the fabric of our society, starting with social injustice and human indifference,” said Beech.
What Do You Know About Disability Cultural Competence?
Recently, I had the opportunity to give a webinar on disability cultural competence to social service workers, but was met with many blank stares. As a disabled social worker myself, I often notice that the disability community is not recognized as a cultural group. Disability is also not considered as a social identity in diversity considerations, despite the ways the community feels about it. Frankly, our field has a long way to go when it comes to developing disability cultural competence. Let’s see if we can change that.
Why the We Need to Prioritize the Disability Community
You may be asking yourself, why all the focus on disability? Well, the disability community comprises 26 percent of the adult U.S. population – that’s one in four Americans according to the Centers for Disease Control. Among children under the age of 18, estimates suggest that 4.3 percent of the population is disabled according to the U.S. Census from 2019. This means that social services workers are interacting with the disability community all over! It’s also important to note that disability transcends race, ethnicity, gender and other social identities, as seen in the graphic below (courtesy of Courtney-Long, Romano, Carroll, et al., 2017). So we need to remember to be intersectional in our practice – these are not siloed communities.
Importance of Disability Identity
I’d like to transition now to talking about the importance of having a disability identity. Some people identify as disabled from a cultural perspective. Some people are not even aware that this is an option and you can open their eyes to the world of disability as a resource for them. In other words, for some, this is a missed opportunity to connect to a supportive network. For others, it’s a choice not to identify as disabled either due to stigma, internalized ableism or other beliefs. The idea is that developing a strong disability identity is super helpful with your long-term well-being. And in order to do this, you have to both connect with the disability community and with disability culture. So what is that?
What is Disability Culture?
In short, disability culture is the “sum total of behaviors, beliefs, ways of living, & material artifacts that are unique to persons affected by disability.” It’s essential for social service workers to be tuned in to disability culture so they can leverage it to connect with their clients. And let’s be clear, disability culture does NOT consist of disability service programs. Where we really see disability culture come alive is on social media sites, such as Twitter and Instagram. You can follow some of the major disability culture hashtags to see the dialogues and debates that are hot in our community right now, such as: #DisabilityTwitter; #DisabilityVisability; #DisabilityAwareness; #IdentityFirst; #DisabilityLife; #Spoonie,#SpoonieLife, and more.
You may notice that the last two hashtags included the word “spoonie.” This derives from “spoon theory,” which is an actual theory based on a metaphor about how much mental and physical energy a person has to accomplish their activities of daily living (ADLs) and instrumental activities of daily living (IADLs). The disability community talks about how many “spoons” they have as a unit of measurement of energy – and sometimes refers to themselves as spoonies. Please note that in teaching you this, I am helping you to develop your disability cultural competence.
How Build Disability Cultural Competence
Other ways to build up your disability cultural competence are to check out the Disability Visibility Project, which tells the stories of diverse members of the community in wonderful ways. And there are a range of organizations, such as Sins Invalid, which founded the disability justice movement. You can also read the 10 principles of that movement in this short document. This will help you to tune in to the disability pride movement. We have a pride month and a pride flag too, it happens in July.
When it comes to engaging in disability competent practice, we need to develop knowledge about disability culture and disability history. We can also consider taking the following steps to round out this competence:
First, we need to examine our own attitudes about disability and engage in reflective practice around that. You can consider your own implicit bias about the disability community through Harvard University’s Project Implicit test about ableism, or through social worker Vilissa Thompson’s guide to checking your own ableism.
Second, developing disability cultural competence over time also includes a careful look at the terminology we are using and respecting disabled people’s choice of identity-first language in many cases. You can read more about that here and throughout that site. The Harvard Business Review also has a thoughtful essay on why you need to stop using particular words and phrases. It’s a great resource and helpful read for many.
Third, we also need to think respectfully about disability etiquette and how ideas play out in different parts of the disability community. One should presume competence about us – all of us! We ask that you respect our bodily autonomy, speak to the person and not their companion/interpreter, ask before you help, be sensitive about physical contact/equipment contact, don’t make assumptions about capacity, listen to us, don’t assume you know better and if you are in doubt about what to do, ask! Writer Andrew Purlang sums up his disability etiquette request as follows:
- Don’t be afraid to notice, mention, or ask about a person’s disability when it’s relevant — but don’t go out of your way!
- Offer to help, but make sure to listen to their response, respect their answer, & follow their directions
- Don’t tell a disabled person about how they should think about or talk about their own disability
- Don’t give unsolicited medical, emotional, or practical advice
- Don’t make a disabled person responsible for managing your feelings about their disability, or for your education on disability issues
- If you make a mistake, just say you’re sorry and move on. Don’t try to argue that you were right all along.
Taken together, these steps, learning disability culture, and examining our own attitudes about disability, go a long way towards the development of disability cultural competence. But none of it will do any good if we are not fighting for disability access and disability inclusion, which are central issues for the disability community. Many people think that issues of access were solved by the passage of the Americans with Disabilities Act of 1990. But the implementation of that law is fraught and embattled, and there is lots of work to be done on the access front. Take a look at these simple guides below. They will go a long way in helping to engage the disability community and making us feel welcome! Above all, remember our movement’s rallying cry, “nothing about us, without us!”
Connect With SWHELPER
Study Shows Immune Cells Against Covid-19 Stay High in Number Six Months After Vaccination
A recent study by Johns Hopkins Medicine researchers provides evidence that CD4+ T lymphocytes — immune system cells also known...
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