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Enrique Barrera
Moberly
WRI 010
12 December 2014
Research Proposal: Sickle Cell Anemia Patients need Help
Abstract:
In my research proposal Sickle Cell Anemia Patients need Help, I rebuttal about the
changes done to help out those that have sickle cell anemia in hopes of helping them more. I
support my proposal by using statistics from doctors to analyze the effects of sickle cell anemia
and addressing the disadvantage sickle cell anemia patients have over regular Americans. My
purpose is to change the minds of insurance brokers and Congress in order to help the millions
that have to live and suffer through sickle cell anemia.
Background/Problem:
Roughly 68% of children from birth to three years of age who have sickle cell anemia die
(Center for Disease Control and Prevention). Sickle cell anemia is a genetic disorder in which
blood cells develop into a sickle shape as shown in Figure 1 and becomes less efficient than that
of a regular blood cell (Nietert 357-366). It is most common in those with African-Americans
heritage and those with the heritage of other locations as shown in color by regions in figure two
and it affects roughly 90,000 Americans while about 2.5 million are carriers (National Institute
of Health). It is a disease that can be passed on to children and it is a recessive allele so carriers
do not show any symptoms of having the disorder while those whom have it have the full extent
of the disease as shown in Figure 23 (Nietert 357-366). Those who have the disease suffer
dramatically from it and can even be excruciating.

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Figure 1

Figure 2

Figure 3
All three pictures from Sickle-cell disease Wikipedia

One person with sickle cell anemia, Charles Paylor, said that the pain of having it was
like someone clamping down on your entire body with a vise grip and that without pain relief
you go crazy (Jervey 56-57). This individual is an example of someone who has to suffer from
the disease and thankfully live to tell about his pain. Having sickle cell anemia is brutally painful
to have and there had been research done in Cameroon that having the disorder affects your
cognitive abilities as well (Ruffieux 143-160). This research has added to my knowledge about
the degenerative abilities for those with the disease and current laws today can be manipulated to
help these people more.
Today, there are current laws present to address sickle cell anemia at a government level
and it does mandate some insurance to allow coverage for sickle cell anemia and to a broad sense
(Quick 665-691). Heather R. Quick is a woman from the Iowa Law Review with a degree in law
whom made an article summarizing the legislation around today regarding Sickle cell anemia.
Although there may be some laws in place, there are low enforcements to these policies and
insurances are not explicitly directed as to what they have to cover from patients with the disease
since having the disorder makes people more susceptible to other diseases so no specificities are
made (Somjee 112-118). Quicks analysis brings insight about what is being done today since
there is indeed help already available. The problem here is not that there is no help available but

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that some more should be done since there is new research that proposes incapability in function
within sickle cell anemia patients.
Sickle cell anemia has been addressed in the past and there has been legislation to help
those affected by the sickle cell disease according to Heather R. Quick. There can still be more
done to provide care for patients with the disease to prevent too many symptoms so there are less
medical bills that need to be covered. According to a study done by the British Journal of Health
Psychology, adults with the disease struggle to fend for themselves and maintain a positive
mindset as they live their lives. The study was conducted over several people with many
different background and those that had children suffered a lot monetarily. While many had the
will to fight for a fair chance, many found that extremely difficult due to their restrictions in
function.
The Affordable Care Act offers a solution that is prominent but that still involves
payments for insurances (Sicklecelldisease.org). While the insurances cant deny coverage, they
can still charge the patients for longer term payments. No longer is there a denial in coverage but
rather the struggle to pay back insurers later. These quotas vary upon health plan but the fact that
the chronic illness prevents the victim from operating like the rest seems absurd for equal
payment for insurers.
What needs to be made is a new plan that changes legislation already around to obligate
insurers to take into account that people with sickle cell anemia struggle more to pay for their
treatments due to their chronic illness. Once this is recognized, the help they truly need can be
obtained since they have an unfair disease to handle; a disease that had odds against them and
restrain their potential despite their heart and strength.
Solution:

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Sickle cell anemia has been a prevailing genetic disorder that needs attention to finally
stop its annoyance and suffering. The Iowa Law Review provides current legislation that
addresses the monstrous recessive allele disorder but there is still quite a bit that can be done to
tweak the coverage for sickle cell anemia patients so that the disorder may be a fully handled
problem and not be a factor in contributing to any other disease. The passing of the Affordable
Care Act also serve as a tremendous help for coverage but to have coverage, you need health
insurance. This health insurance needs to be paid and if you cannot afford that, you will be fined.
While the problem of insurances is a separate topic, there needs to be an establishment that
recognizes the difficulty in paying for sickle cell anemia patients.
With this new plan, those with the chronic illness, sickle cell anemia, could have some
more help with their payments toward their health coverage. Many people can be helped and be
allowed to live their lives peacefully. Melissa Creary of the Journal of Womens Health
discussed implications for future directions for sickle cell anemia and to create organizations for
a cure but after a ten year trial, interests soon faded (Creary 575-582). This was an example of
trial for a cure but it did not end well since Sickle cell anemias property of being a genetic
disorder proved itself a harsh disaster. While the cure remains a trial for time, something that can
be done now is at least help those with sickle cell anemia in paying for their medical insurance.
This medical insurance is sure to cover the expenses of sickle cell anemia under the affordable
health care act as stated in the background but nothing in there was there an implementation of a
cure. Creary had statements from the Center of Disease Control that said that they had plans to
address sickle cell anemia but they were abrupt and gave nothing more other than to say that they
had a plan. None the less, there needs to be something done to prevent this disease from
continuing to cause trouble to Americans.

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A cure may not all be that easy since sickle cell anemia has a tendency to cause
susceptibility to other illnesses as well. Sagir G. Ahmed from the Mediterranean Journal of
Hematology & Infectious Diseases has a couple medical degrees and has done research revolving
around the accelerated pathogenesis in sickle cell anemia patients. Sagir proves that sickle cell
anemia can be the cause of fatality within those that have two of the recessive alleles and that
that have a less abundant immune system that almost invites pathogens to infect them (Ahmed 19). A cure could solve those that have sickle cell anemia but the odds of curing the disease in
time before being infected with another is still at a large risk. The best and greatest possible
choice would be to help out those in need now while a cure is being developed since the Center
of Disease Control already planned for a possible cure.
Many may argue about the possibility of stem cells being a prominent cure, but that is
arbitrary and not absolute. David Prentice, an article maker from National Right to Life News
uses information researched by doctors to reveal stem cells as a viable cure for sickle cell anemia
(Prentice). This being a short article does not reference much to sickle cell anemia and it could
not because stem cells are not a widely accepted cure for many things yet. While it could be a
possible cure, this field of research still needs to be perfected before any implementation of a
cure could be made and even more; implemented. There must then be something done to raise
the awareness about the seriousness of the disease on the economy.
While sickle cell anemia is not widely known about, it does make a major impact on
Americans. Paul Nietert is a doctor from an institution in South Carolina and he focuses on
research in health services. Pauls article is a great reference to look at to get a basis on the
power of sickle cell anemia and how costs are a great problem to face. Paul discloses general
costs of living for sickle cell anemia patients and while this number ranges based upon severity

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of the disease and family sizes, total costs per year range in the hundreds of millions for people
within the United States (Nietert 357-366). It is from here that I draw a call to action that needs
to be done now so that people with sickle cell anemia get the help they need and to help those in
the future that may acquire the disease later as well.
To get a basis of what people with sickle cell anemia, Helen Caird from the British
Journal of Health Psychology conducted an experiment to record data about various individuals
with sickle cell anemia over the age of thirty. This then has qualitative data about the lives they
lived since most of these people had families and had to take care of their children (Caird). Many
had the will to fend not only for themselves but kept on going for their children. The affordable
care act helps these people tremendously to cover the expenses they need to be treated but the
problem lies in the after payment. The ACA covers the payment but to have coverage, people
need to pay to have insurance. It is in this payment that needs adjustment since there is
something more that needs to be considered before charging these people. Research done in
Cameroon helps justify this belief.
N. Ruffieux is a doctor that conducted an experiment in Cameroon to test the cognitive
ability of children. This experiment tested French speaking children in Cameroon with sickle cell
anemia and the results were astounding. These children showed a tremendous percentage in
cognitive deficiency from 15 to 40% (Ruffieux 143-160). This kind of deficiency only means
that the time of mental development for these people has been decreased when it should be at its
prime. This leads to the new speculation I am now adding to justify cover payments for sickle
cell anemia patients seeking insurances because they are not as capable to fend for themselves as
a normal person.

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The quickest and most efficient way to go about the problem of sickle cell anemia is to
wait for technology to advance so new cures could hopefully be made and to help out sickle cell
anemia patients now to help out Americans with sickle cell anemia now. With payments to
insurances being covered, or at least lowered, the problem about sickle cell anemia patients not
being able to fend for themselves could be helped that much more. With this plan being initiated,
the future of Americans with sickle cell anemia could be eased and the people with it, at about 3
million with the disease, could focus more on their families (Nietert 357-366). Now is the time to
act and help out those in drastic need from an elusive disease that infects against willpower.
Conclusion:
Sickle cell anemia affects millions and is carried silently in many more than that (Nietert
357-366). The disease takes many lives each year but it can be eased with the implementation of
a few new plans. Research is on its way but there is no clear evidence of anything prominent
showing up soon due to the severity of sickle cell anemia being a genetic disorder of the blood
and it being a recessive allele. The research done around the world leads new speculation that
sickle cell anemia may be more potent than previously analyzed by anyone.
This potency has many variants but a few include being susceptible to pathogens and
having a cognitive disability. Being susceptible to pathogens means they can contract other
illnesses easier leading to greater health costs that need to be paid while a cognitive disability
affects performance. This performance is what people need in order to take care of themselves. It
is unfair to charge people who cannot act and earn money as easily as those who do not have the
disease. The simple act of reducing the charge of insurance to take into account performance is
all that is needed to help sickle cell anemia patients within the united states while the wait on
technology is in process in hopes that a cure can be made. To live with more ease while they wait

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is all that is being requested to help out those with sickle cell anemia so that they do not suffer as
much financially.

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Works Cited
Ahmed, Sagir G. "The Role Of Infection In The Pathogenesis Of Vaso-Occlusive Crisis In
Patients With Sickle Cell Disease." Mediterranean Journal Of Hematology & Infectious
Diseases3.1 (2011): 1-9. Academic Search Complete. Web. 31 Oct. 2014.
Caird, Helen, Paul M. Camic, and Veronica Thomas. "The Lives Of Adults Over 30 Living With
Sickle Cell Disorder." British Journal Of Health Psychology 17.3 (2011): 542558. Academic Search Complete. Web. 31 Oct. 2014.
Centers for Disease Control and Prevention. "Facts About Sickle Cell Disease." Centers for
Disease Control and Prevention. Centers for Disease Control and Prevention, 16 Jan.
2014. Web. 10 Dec. 2014.
Creary, Melissa, Dhelia Williamson, and Roshni Kulkarni. "Sickle Cell Disease: Current
Activities, Public Health Implications, And Future Directions." Journal Of Women's
Health (15409996) 16.5 (2007): 575-582. Academic Search Complete. Web. 31 Oct.
2014.
Jervey, Gay. "Charles Paylor." Money 32.11 (2003): 56-57.Academic Search Complete. Web. 31
Oct. 2014.
Nietert, P.J., M.D. Silverstein, and M.R. Abboud. "Sickle Cell Anaemia: Epidemiology And
Cost Of Illness." Pharmacoeconomics 20.6 (2002): 357-366. Academic Search Complete.
Web. 29 Oct. 2014.
NIH. "What Is Sickle Cell Anemia?" - NHLBI, NIH. National Heart, Lung, and Blood Institute,
28 Sept. 2012. Web. 10 Dec. 2014.
Prentice, David. "Adult stem cells-best-kept secret, treating sickle cell anemia'." National Right
to Life News Oct. 2010. Opposing Viewpoints in Context. Web. 31 Oct. 2014.

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Quick, Heather R. "Privacy For Safety: The NCAA Sickle-Cell Trait Testing Policy And The
Potential For Future Discrimination." Iowa Law Review 97.2 (2012): 665-691. Academic
Search Complete. Web. 31 Oct. 2014.
Ruffieux, N., et al. "Association Between Biological Markers Of Sickle Cell Disease And
Cognitive Functioning Amongst Cameroonian Children." Child Neuropsychology 19.2
(2013): 143-160. Academic Search Complete. Web. 29 Oct. 2014.
SCDAA. "Mission & Vision." Sickle Cell Disease Association of America, Inc. -. SCDAA, 2014.
Web. 12 Dec. 2014.
Somjee, Saika S., et al. "Advanced Glycation End-Products In Sickle Cell Anaemia." British
Journal Of Haematology 128.1 (2005): 112-118. Academic Search Complete. Web. 29
Oct. 2014.
Wikipedia. "Sickle-cell Disease." Wikipedia. Wikimedia Foundation, 8 Dec. 2014. Web. 13 Dec.
2014.