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INSPIRATION FOR ARTICLE

My practicum is at Nationwide Children’s Hospital in Columbus, Ohio, 
where I am a social work intern in the division of pulmonary medicine. 
Nationwide Children’s is home to one of the highest ranked Cystic 
Fibrosis Centers in the country and serves around 500 people with CF 
in Ohio, West Virginia, and Kentucky. Through this placement, I have 
worked with many people of all ages who have CF, and have recognized 
the psychosocial impact that new, revolutionary medications have 
had on the lives of these individuals. I have been so inspired by the 
resilience and strength of those that I have worked with. As there is 
limited research on this topic, I hope this paper becomes part of a larger 
conversation on how we can support the unique experiences of people 
with CF.

I am a 2024 graduate from the Columbia School of Social Work on 
the Integrated Practice and Programming track and specializing in the 
study of health, mental health, and disabilities. I am currently living in 
Columbus, Ohio, and excited to see where this field takes me next.

ABIGAIL
NIKIFOROVS



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“DIAGNOSED WITH NEW HEALTH” ABIGAIL NIKIFOROVS

ABSTRACT

Cystic fibrosis (CF) is a chronic, progressive, genetic, and life-
limiting lung disease that impacts approximately 105,000 individuals 
globally, including 40,000 individuals in the United States. In 2019, 
a revolutionary new drug, elexacaftor/ivacaftor/tezacaftor (ETI), 
was approved to manage some of the major symptoms of CF and 
dramatically increase the lifespan of people with cystic fibrosis (pwCF). 
Many individuals with CF cannot work full time and require Medicaid, 
Supplemental Security Income (SSI), Social Security Disability 
Insurance (SSDI), and other financial assistance programs to pay for 
treatments and medical expenses. Yet in recent years, pwCF who are 
on ETI have been increasingly losing benefits. A possible explanation 
for this is the effectiveness of ETI in improving lung function, creating 
the perception that pwCF are no longer disabled by their condition. 
Even with this “miracle” drug, pwCF continue to experience significant 
complications and vulnerabilities to their physical and mental health as 
well as limitations on daily living and employment. The compounded 
vulnerabilities these individuals experience leave them without a safety 
net. Social Security policies for pwCF require revisions to prevent 
further biopsychosocial damage to this population. Two policies will be 
recommended: leniency in redetermination, and CF education for those 
who make determination decisions.

INTRODUCTION TO CYSTIC FIBROSIS CARE

“What do you do when you’ve lived your whole life diagnosed with a 
terminal illness and then are suddenly diagnosed with new health? For 

me, it was not a whimsical or magical moment.”  
Luisa Palazola (BioNews Staff, 2021, para. 4). 

C ystic fibrosis (CF) is a chronic, progressive, and life-limiting 
multisystemic genetic disorder, impacting approximately 
105,000 individuals globally, including 40,000 individuals in 
the United States (Cystic Fibrosis Foundation [CFF], n.d.-a). 

Impacting the lungs, pancreas, gastrointestinal (GI) system, reproductive 
system, and other organs, CF presents differently from person to person 
but commonly causes coughing, difficulty breathing, frequent lung 
and sinus infections, and poor weight gain. Managing a demanding 
condition like CF brings significant social, physical, and psychological 
challenges. Socially, it is an isolating disease, as people with CF (pwCF) 
are not allowed to share spaces due to their susceptibility to bacterial 
infections and the risk of spreading infections to other pwCF. This, in 
turn, prevents community building through means such as in-person 
group therapy or sharing classes in schools. Physically, pwCF typically 
need to spend several hours per day managing their condition, whether 
through administering medications and lung therapies, preparing special 
diets, or attending doctors’ appointments. Mentally, this heavy treatment 
burden can take a psychological toll, putting pwCF at increased risk 
for developing a mental illness, while the required isolation creates 
additional psychosocial challenges (Vines et al., 2018; Bathgate et al., 
2022).

In 2019, a revolutionary new drug, elexacaftor/ivacaftor/tezacaftor (ETI), 
which targets the genetic cause of CF, was approved by the Food and 
Drug Administration (FDA) under the brand name, Trikafta (U.S. Food 
and Drug Administration [FDA], 2019). CF is caused by mutations in a 
gene called the cystic fibrosis transmembrane conductance regulator



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(CFTR). All people possess two copies of the CFTR gene, but for pwCF 
these genes are mutated, leading to dysfunctional CFTR proteins 
that interfere with proper cell hydration, causing the mucus covering 
these cells to thicken (CFF, n.d.-a). ETI combines three types of CFTR 
modulators to help correct these protein defects (FDA, 2019; CFF, 
n.d.-d). 

This new medication has dramatically increased life expectancy for 
pwCF. Prior to the emergence of ETI and similar therapies, the projected 
lifespan for pwCF was approximately 37 years old (Lopez et al., 2023). 
If ETI is started between the ages of 12 and 17 and taken as directed by 
a patient with good lung health, ETI will nearly double one’s projected 
lifespan to 82.5 years old (Lopez et al., 2023; FDA, 2019; Ladores & 
Polen, 2021). In addition to life expectancy, ETI also increases pwCF’s 
ability to get pregnant and improves pulmonary function to the extent 
that patients are able to withdraw from lung transplant waitlists (Ladores 
& Polen, 2021). 

An estimated 90% of pwCF have the F508del gene mutation that makes 
them eligible to take ETI, while around 10% of other pwCF have different 
gene mutations that make ETI and other modulator therapies ineffective 
(FDA, 2019). ETI and other modulator therapies are treatments, not 
cures. This means that despite these remarkable medical advances, 
CF remains a complex and often disabling condition requiring frequent 
medical checks and a high level of medication and diet adherence 
while continuing to pose an increased risk of lung infections and other 
physical and mental health issues. As a result, many individuals with CF 
require Medicaid, Supplemental Security Income (SSI), Social Security 
Disability Insurance (SSDI), and other financial assistance programs 
to maintain a stable foundation (CFF, n.d.-b; CFF, n.d.-c). Medicaid is 
a critical resource and can help cover ongoing costs of treatment for 
pwCF, including ETI’s hefty price tag of more than $300,000 per year in 
the United States (McConnell et al., 2020; Wexler, 2023). Yet Medicaid 
does not cover anything beyond what is considered medical care (CFF, 
n.d.-b). This means SSI and SSDI are crucial supports for individuals 

disabled by CF-related conditions, particularly those who remain unable 
to work (CFF, n.d.-c). 

As a social work intern at a CF center at a hospital in Ohio, I have been 
exposed to the countless biopsychosocial struggles of pwCF and have 
had many questions about what can be done to support this population. 
One trend identified by patients at this hospital in the last few years 
has been a significant increase of pwCF on ETI losing their Social 
Security Administration (SSA) benefits. The multidisciplinary hospital 
team attributes this to ETI’s effectiveness in improving lung function so 
much that on the surface, pwCF appear to be no longer disabled by the 
disease. 

This trend raises concerns since, even while taking this “miracle” drug, 
pwCF continue to experience considerable physical and psychological 
challenges and vulnerabilities and are frequently still admitted to 
hospitals for surgeries, pulmonary exacerbations, lung infections, 
GI issues, and other complications. Since ETI is not a cure, adults 
with years of lung scarring may only see minor improvements in lung 
function or simply may not see further damage (K. Pasley, personal 
communication, March 22, 2024). For many on ETI, they are not thriving, 
just surviving. 

While official data on rates of removal of financial benefits are limited, 
the increase in first-hand accounts is alarming, and CF social workers 
and other professionals who have observed the financial consequences 
of losing this support have struggled to identify resources to help pwCF 
(CBS News, 2019). This population has struggled with this disease 
for their entire lives, and because CF was previously considered a 
“death sentence,” they were not adequately prepared for such an 
increase in life expectancy without financial support. Their previous 
prognoses meant they often did not invest in their education, personal 
relationships, financial investments, and careers, and as a coping 
strategy “often ‘do things now rather then [sic] later’ as a strategy 
to experience their limited and precious lifetime to the fullest” 
(Moola, 2019, p. 360). Now that the SSA appears to be increasingly 

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removing benefits for those on ETI, those impacted are forced to 
seek employment. However, due to the nature of the disease, the 
demands of daily treatment, and having limited lung function, many are 
physically unable to attend school or work full time. The compounded 
vulnerabilities these individuals continue to experience make the loss of 
a safety net even more challenging. 

Social Security policies pertaining to pwCF need to be revised to 
prevent further biopsychosocial damage to this population. Two case 
studies from Ohio will be shared to provide further insight into the 
struggles these individuals face as they transition to this new era with 
ETI. Policy recommendations will then be discussed, including leniency 
in SSI and SSDI redetermination and CF education for those who 
make determination decisions. Lastly, social work implications will be 
discussed, including disparities and best practices for supporting this 
population with the life changes that accompany ETI therapy.

CASE STUDIES FROM OHIO 

One individual seen in the CF clinic at a hospital in Ohio exemplifies 
why vulnerable pwCF benefit from Social Security coverage even as 
their health improves (K. Pasley, personal communication, November 
11, 2023). This individual is a 24-year-old who grew up thinking he 
would die young due to this disease. He struggled to get an education, 
never learned how to adequately take care of himself, and was unable 
to generally thrive. He was 22 years old when ETI became available. 
After ETI dramatically improved his respiratory health, he lost Social 
Security benefits. He has not been able to maintain a steady job as his 
lifelong illness prevented him from learning critical skills, and, despite 
his improved lung function, he has struggled to regularly attend work 
hours due to being sick, often taking leaves of absence. As a result, his 
financial situation remains unstable and he has continued to rely on the 
financial safety net of Social Security. 

Another individual seen in the CF clinic, a 50-year-old male with CF, 
was able to work for years before becoming disabled by his illness. He 

had never experienced any interruptions to receiving SSDI benefits until 
ETI became available. He was the first person in this CF clinic to raise 
concerns about what might happen to his SSDI if he became healthier 
when he took ETI. At 50 years old, he was accustomed to his quality of 
life with SSDI and was not interested in trying to re-enter the workforce 
due to his age and health. He said that he would even choose to stay off 
of ETI in order to keep his benefits. 

These stories have become increasingly common. In 2019, an attorney 
who runs the Cystic Fibrosis Legal Hotline noted, 

We’ve seen a five-times increase in the number of people with 
cystic fibrosis that have been reviewed in the past 18 months. 
And we think that Social Security is targeting young people with 
chronic illness in an effort to reduce the number of people getting 
benefits (CBS News, 2019, 2:45). 

Given this pattern, many pwCF are understandably concerned about 
choosing between their health, their job, and Social Security benefits.

RATIONALE FOR ACTION 
BENEFITS OF SOCIAL SECURITY AS A SAFETY NET

Financial benefits, including SSI and SSDI, are an important lifeline for 
pwCF. SSI redetermination, which evaluates financial resources and 
living arrangements, occurs every 1 to 6 years, and Continuing Disability 
Review (CDR), which evaluates the medical condition of SSI and SSDI 
recipients, occurs every 1 to 3 years (Social Security Administration 
[SSA], 2024a; SSA, 2024b; SSA, n.d.-c). If one has a medical condition 
that is not expected to improve, such as CF, SSDI redetermination will 
occur every five to seven years, though usually seven years for pwCF 
(SSA, 2024b; CFF, n.d.-c). Redetermination considers whether one’s 
health has improved over 12 months; financial benefits are rescinded if 
one’s health has improved to a point where one can work (CFF, n.d.-c). 

The SSA also discontinues benefits if someone earns more than $1,550 
per month (SSA, 2024c). If a person with CF earns more than the 

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maximum limit, even if their health is still precarious, they lose benefits, 
and if their illness later prevents them from working, they become 
financially vulnerable. A social and financial safety net is therefore vital 
for improving employment and housing stability, maintaining continuity 
of health care, and avoiding added financial stress (Crane et al., 2019). 
SSI and SSDI programs provide this much-needed safety net while the 
loss of benefits puts an already vulnerable population at even greater 
risk.

MENTAL HEALTH CONCERNS FOR PWCF TRANSITIONING 
TO A LONGER LIFE EXPECTANCY

A number of studies have found ETI to impact mental health and 
social functioning in pwCF in complicated and even paradoxical 
ways. Several studies found, for example, that improved pulmonary 
health was correlated with improved mental health (Hjelm et al., 2023). 
However, some studies looking at the effects of ETI found that, while 
the medication improved physical symptoms, ETI was correlated with 
worsening mental health symptoms, sleep issues, and increased rates 
of changing or initiating psychiatric medication (Zhang et al., 2022; 
Bathgate et al., 2022). Other studies found paradoxical results on ETI’s 
impact on mental health (McCoy et al., 2023; Piehler et al., 2023; Zhang 
et al., 2022), and some found no statistically significant improvements in 
anxiety scores, depression scores, emotional functioning, or perception 
of body image (Zhang et al., 2022; Finlay et al., 2021). 

One explanation for this lack of improvement or worsening of mental 
health symptoms may be the sudden change in longevity and quality of 
life. Prior to these new modulator therapies, CF was known as a “child 
killer,” and many pwCF were told from a young age they would have a 
limited lifespan (Kempner, 2022). One individual reflected, “I was just 
living day-to-day instead of planning for the future,” (Kempner, 2022, 
p.3) while another stated she had “never pictured a future for herself 
beyond the next five years” (Kempner, 2022, p.1). As a result, many 
pwCF who grew up without these new modulators have not invested 
in their life, health, education, or careers. They may not have created 

long-term goals nor developed independence or coping skills. This 
is exacerbated by the fact that many PwCF experience high rates of 
comorbid mental health diagnoses, including depression, anxiety, 
obsessive-compulsive disorder (OCD), medical traumatic stress (MTS), 
attention-deficit hyperactivity disorder (ADHD), autism spectrum 
disorder (ASD), oppositional defiant disorder (ODD), and disordered 
eating (Bathgate et al., 2022; Lord et al., 2022; Guta et al., 2021). Having 
grown up with a terminal illness mindset, many are now struggling to 
establish long-term goals as they adjust to a sudden and unexpected 
increase in life expectancy. Additionally, the risk of early mortality did 
little to motivate pwCF to establish positive health habits such as 
routines around eating, sleeping, and CF medical care.

This adjustment is also compounded by the fact that, even with ETI, 
PwCF often have difficulty completing instrumental activities of daily 
living (IADLs), which include managing medications, money, and 
transportation. This makes full-time work challenging, leading to lower 
employment rates and, consequently, lower rates of employment-based 
insurance (Callahan & Cooper, 2007). PwCF who do work often end up 
needing to take long leaves of absence due to susceptibility to illness, 
CF exacerbations, and hospitalizations. As a result, they rely on Social 
Security benefits to help cover living and medical expenses. A 2019 
study on the experiences of Ohioans with co-occurring chronic health 
conditions and mental health impairments found many experienced 
financial hardships such as unemployment and/or financial instability 
and, in turn, had difficulties paying for food, rent, and other necessities 
(Crane et al., 2019). 

According to one individual with CF who started ETI as a young 
adult, “to fathom what life would look like with stable health was 
incomprehensible to someone who never had that” (BioNews Staff, 
2021, para 3). One study found that an individual who began ETI 
“encountered unanticipated internal turmoil” due to this change in life 
expectancy and no longer being seriously chronically ill (Ladores and 
Polen, 2021, p. 2). This individual elaborated that this transition period 
caused them anxiety as they thought that ETI would stop working: “I’m 

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so nervous because I feel so good and I’m not used to living this way, 
and I’m so afraid I’m gonna lose it” (Ladores and Polen, 2021, p. 3).

The Cystic Fibrosis Foundation recommends that pwCF ages 6 
and older be seen by an accredited CF clinic at least 4 times per 
year (CFF, n.d.-e). There are more than 130 accredited CF clinics 
throughout the United States, each with a multidisciplinary team of 
doctors, nurses, nutritionists, respiratory therapists, social workers, 
and psychologists to provide comprehensive care for CF patients. 
These appointments require patience through a lengthy process of 
medical tests, scans, blood tests, and pulmonary function tests (Finlay 
et al., 2021). Social workers on these teams play an important role 
in identifying psychosocial and transitional needs of pwCF, meeting 
with patients yearly to conduct psychosocial reviews and assist with 
resource navigation and support (Finlay et al., 2021). Now, with these 
new modulator therapies, social workers are faced with the additional 
challenge of supporting a CF population as they adjust to the prospect 
of a longer life than they ever anticipated.

PROPOSED POLICY OPTIONS

To improve the livelihoods of pwCF, two policies are proposed in the 
state of Ohio which could be adapted across the country based on 
each state’s specific SSA policies. The first is a higher level of leniency 
when redetermining eligibility for social security (SSI/SSDI). The second 
is a CF-specific training for consultative examination (CE) providers 
who complete SSDI evaluations and redeterminations. Currently, SSI/
SSDI recipients who disagree with a reconsideration determination can 
request a hearing to appeal the decision (SSA, n.d.-a). However, this 
puts an undue burden on pwCF who may be physically unable to file the 
appeal or attend the hearing due to their condition and struggles with 
ADLs.

POLICY #1 - LENIENCY

A standard that allows for more leniency would help protect this 
vulnerable population from losing SSI or SSDI benefits simply because 

they have been more physically healthy since beginning ETI or other 
modulators. As seen in research studies, improved physical health when 
taking a modulator does not necessarily mean one’s mental health or 
ability to work will improve (McCoy et al., 2023; Bathgate et al., 2022). 
As this population transitions to having longer lives, a financial safety net 
would alleviate stress by providing stable resources to be used for basic 
necessities.

To implement this, the SSA would alter the qualifying definitions of 
“severity” and “frequency” of CF symptoms to make the removal of 
benefits a more medically-informed and thorough process. This change 
would occur in the SSA’s evaluation manual at the state and local SSA 
offices in Ohio. The SSA does not publicly release eligibility criteria 
and only provides a “Listing of Impairments,” which broadly mentions 
that the SSA will consider past work experience, severity of medical 
conditions, age, education, and work skills (SSA, n.d.-a). Due to this 
ambiguity in criteria, approval varies by each CE evaluator. To improve 
this system, eligibility requirements could be amended to include a 
section for pwCF that takes into account their age when beginning a 
modulator therapy, long-term goal planning, pulmonary function test 
levels, and other relevant medical complications. These factors would 
provide a more comprehensive picture of one’s health and how they are 
coping with the transition to taking a modulator and having an extended 
lifespan. When considering job history, the criteria could be changed 
from “ability/inability” to work to “stability/instability” in work. This subtle 
yet significant change in language would expand eligibility to include 
those who experience leaves of absence due to CF-related medical 
issues. This more holistic framing better addresses the complexity of 
this disease and the careful management it requires.

POLICY #2 - TRAINING

In each state, disability claims are reviewed by CE providers, made up 
of physicians, psychologists, and other health professionals recruited 
by the SSA's professional relations officers (SSA, n.d.-b). Although 
these providers undergo extensive training, they are not experts in 

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every disease and its respective challenges. Without training in CF 
specifically, they are unlikely to recognize that, although on paper the 
health improvements from ETI therapy may give the impression that 
someone with CF can work full time, the mental and physical effects of 
their illness often remain debilitating. A second policy recommendation, 
therefore, is a one-time CF-specific training for CE providers to help 
them understand the nuances of this complex, lifelong disease and how 
important SSDI is for someone trying to manage it. 

To implement this second recommendation, a committee from the 
Cystic Fibrosis Foundation (CFF) would select medical professionals 
in Ohio to provide training to the CE providers who process SSDI 
determinations and redeterminations. These one-time training sessions 
would be an hour long to remain cost-effective and would include 
subject matter experts (SMEs) who work with pwCF. CE providers who 
receive this training would be certified in CF redetermination and be 
primarily responsible for reviewing CF cases. The end goal would be to 
help evaluators make more informed decisions. The CFF would work 
with the SSA to continually monitor and review SSDI cases to ensure 
that pwCF are receiving proper support.

Allowing the most vulnerable pwCF to remain on Social Security would 
reduce costly hospitalizations and additional medical care. Someone 
who has their SSI/SSDI revoked will be forced to work more, putting 
them at increased risk of stress and infection. The safety net of Social 
Security allows them to work as much as they can within their own 
limitations, helping to reduce that risk.

SOCIAL WORK IMPLICATIONS 

Social workers have continually played an important role in providing 
support to pwCF, and now with ETI, they must rise to the additional 
challenge of helping this population navigate the adjustment to a longer 
lifespan. One important way social workers can do this is by providing 
career counseling to pwCF who have a newly extended life expectancy 
and did not anticipate having to plan for a long-term career. 

Social workers follow the guiding principles of competence, challenging 
social injustice, and promoting the dignity and worth of all people as 
they work to address social problems such as health inequity (National 
Association of Social Workers, 2021). As such, there is an important 
role for them to play in confronting racial and economic disparities 
among pwCF as treatments and technology improve. Because of the 
health disparities caused by structural racism, people of color with CF 
experience: overall lower lung function, nearly doubled rates of death 
before the age of 18, delayed diagnosis, higher rates of pulmonary 
infections, limited access to care, lower access to lung transplants, 
lower rates of health literacy, and are less likely to be represented in 
clinical research (Zampoli, 2023; CFF, 2020). 

In terms of economic disparities, many low-income countries have less 
access to modulator therapies; in fact, only an estimated 12% of pwCF 
globally have access to CFTR modulators, like ETI (Guo et al., 2022, 
as cited in Zampoli, 2023). Low to middle-income countries in Central 
America, South America, the Middle East, South Asia, and Southern 
Africa have not been prioritized for negotiating contracts for accessing 
ETI (Zampoli, 2023). 

While the U.S. does have contracts for manufacturing and distributing 
ETI, the U.S. government does not negotiate prices with drug 
manufacturers, leading to exorbitant costs (Martins, 2020; Ginsburg & 
Lieberman, 2021). The yearly $300,000 list price for ETI is not feasible 
for the vast majority, leaving pwCF to rely on crucial government-funded 
insurance or employment-based insurance to afford this life-saving 
treatment. In addition, the multidisciplinary team at the CF center where 
I intern has noticed that several insurances are no longer covering ETI, 
creating an even greater need for these cost-assistance programs.

Social workers must work to lessen these disparities by centering the 
experiences of disproportionately impacted populations, providing 
education to care teams, and advocating for healthcare equity. 

Finally, it is important for social workers to continue studying the unique 
psychosocial needs of this population. The current best measure of 

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psychosocial functioning for pwCF is the Cystic Fibrosis Questionnaire-
Revised (CFQ-R), which includes assessment questions for physical 
health as well as social-emotional health. Yet this does not include 
questions on the effects of taking ETI. Social workers can advocate for 
questions on the impacts of this transition to ETI to be included in the 
assessment, which should then be used in clinical trials for any new 
CFTR modulator therapies. Accounting for these psychosocial factors 
can provide a more comprehensive picture of how the whole person 
is affected, moving beyond a narrow physiological perspective. Lastly, 
social workers should make sure to facilitate transparent and sensitive 
conversations with pwCF about potential and unanticipated impacts 
these life-altering medications may have (Ladores and Polen, 2021).

CONCLUSION 

There are many unknowns about the quality of life for young people with 
CF who will grow up with these new medications. It is hoped that they 
will adjust well, need fewer safety nets, and plan and achieve long-term 
goals. However, it is clear that the current CF cohort who are suddenly 
facing a longer lifespan will need additional support. Social Security, 
including SSI and SSDI, has long provided a stable foundation for these 
individuals and should not be prematurely taken away. Advocates, 
such as social workers, should appeal to the SSA to be more lenient in 
redetermining eligibility and promote and provide CF-specific training 
to the CE providers who are assessing these cases. If this vulnerable 
population continues to lose benefits, it will have detrimental impacts 
on their physical and mental health and their overall quality of life. 
Because the successful increase in longevity from ETI treatment had the 
unintended consequence of creating new mental health challenges, the 
impacts of the stressors, real-life complications, and financial burdens 
associated with this drug should be studied further. Additionally, more 
research should be prioritized to understand racial and economic 
disparities of access to care for pwCF. While ETI has been revolutionary 
in improving the lives of people with cystic fibrosis, more work at the 
policy level must be done to show these individuals that their health and 
success matters.

REFERENCES

Bathgate, C. J., Hjelm, M., Filigno, S. S., Smith, B. A., & Georgiopoulos, A. M. (2022). 
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791–810. https://doi.org/10.1016/j.ccm.2022.06.014

BioNews Staff. (2021, May 25). 31 Days of CF: The unexpected side of Trikafta. Cystic 
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Callahan, S. T., & Cooper, W. O. (2007). Continuity of health insurance coverage among 
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CBS News. (2019, January 5). 22-year-old with deadly disease loses disability insurance. 
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disability-insurance/

Crane, D., Kim, Y. H., & Adhikari, S. B. (2019). Mental health impairment and co-occurring 
chronic conditions among Ohioans. https://grc.osu.edu/sites/default/files/inline-files/
Mental_Health_2017OMAS.pdf 

Cystic Fibrosis Foundation. (n.d.-a). About cystic fibrosis. https://www.cff.org/intro-cf/
about-cystic-fibrosis 

Cystic Fibrosis Foundation. (n.d.-b). Medicaid and CF. https://www.cff.org/support/
medicaid-and-cf 

Cystic Fibrosis Foundation. (n.d.-c). Social Security disability and CF. https://www.cff.org/
support/social-security-disability-and-cf 

Cystic Fibrosis Foundation. (n.d.-d). CFTR modulator therapies. https://www.cff.org/
managing-cf/cftr-modulator-therapies

Cystic Fibrosis Foundation. (n.d.-e). CF care center visits. https://www.cff.org/managing-
cf/cf-care-center-visits

Cystic Fibrosis Foundation. (2020, November 18). CF Foundation seeks input from 
communities of color. https://www.cff.org/news/2020-11/cf-foundation-seeks-input-
communities-color

Finlay, C., Patel, S., & Evans, J. (2021). Assessing psychosocial distress in cystic fibrosis: 
validation of the ‘distress in cystic fibrosis scale.’ Journal of Clinical Psychology in 
Medical Settings, 29(3), 699–708. https://doi.org/10.1007/s10880-021-09825-w

Ginsburg, P., & Lieberman, S. (2021). Government regulated or negotiated drug prices: 
Key design considerations. Brookings. https://www.brookings.edu/articles/government-
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“DIAGNOSED WITH NEW HEALTH” ABIGAIL NIKIFOROVS



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“DIAGNOSED WITH NEW HEALTH” ABIGAIL NIKIFOROVS


