Leukemia Patient Advocate, Navigator or Health Advocate
The concept of patient advocacy in its current form was developed in 1950’s as the treatment of patients grew more and more technically complicated, as a means to make the voice of the patient more readily heard. In today’s world of constantly evolving medical techniques, treatments, and services, the average individual cannot be expected to be thoroughly acquainted with any and all this material. So it becomes the function of the leukemia cancer patient advocate to perform a variety of services to ease the burden of the patient, and their family, as they learn to deal with every aspect of the disease.
The primary concern of the leukemia advocate is the support of the patient in all aspects of life with the disease, whether they be physical, emotional, or financial. An advocate can assist the patient in investigating available treatment options and educating the patient on the efficacy of each of them, be it pharmacological or surgical. By educating the patient, the advocate can be of great assistance in helping them make an informed decision about their course of action, and the possible side effects and outcomes. Support may also involve recommending counseling services for the patient, and their family members, to help them cope from day to day. Leukemia patient advocates may also be of assistance in helping the patient, and their caregivers, deal with any physical debilitation resulting from the disease, and its treatment.
Another aspect of leukemia patient advocacy is assistance in navigating the financial aspects of treating the disease. An advocate can act as a liaison between the patient and his or her insurance company, assuring that the patient receives any and all benefits to which they are entitled. When one is dealing with a serious disease, it is quite easy to lose track of other aspects of your life. An advocate can help to seek out sources of assistance which can ease the financial burden of the patient.
Education is also a major function of a health advocate. Both the patient, and their caregivers, are often in need of information about how the disease will affect their lives, both during its progression, and in its aftermath. Patients must be informed about how their condition will affect their mobility, the ability to care for themselves, and if they will be left with any permanent impairment to their lifestyle. Caregivers need to be instructed in mechanisms, or techniques they must use to cope with the patient’s daily care, such as injections, proper care of surgical dressings, etc.
The patient, above everything else, needs to know that there is someone in their corner. Someone who will help them find their way through the confusing, and sometimes daunting, world of modern medicine. Someone who will have their best interests in mind as they face challenges presented every day in their struggle to find, secure, and finance the best treatment available.
What is Leukemia?
Leukemia is a type of blood cancer that affects the production of red blood cells as well as the white blood cells. It does this at the source of blood cells formation in the bone marrow and other blood forming sites referred to as the lymphoid tissue. The cancer usually starts at the white blood cells which have the task of fighting diseases in the body. There are many types of leukemia with some more common in children while others are found mostly in adults. The main types of these cancers are:
· Acute lymphocytic leukemia (ALL) – mostly found in children
· Acute myelogenous leukemia (AML) – commonest in children.
· Chronic myelogenous leukemia (CLM) – seen mostly in adults with few or no symptoms for even years. Later the cancer can become acute.
· Chronic lymphocytic leukemia (CLL) – commonest in adults and follows a stretched out trend with a likelihood of feeling okay for long with no need of any medical attention.
In these types, acute and chronic refers to the speed of the cancer growth. Lymphocytic and myelogenous refers to the type of cells involved.
Since the cancer interferes with the primary functions of the blood, symptoms reflect the impairment of these physiological functions. They include:
· Chills and rigors (hotness of the body)
· Recurrent infections
· Unexplained tiredness
· Enlarged lymph nodes
· Bleeding under the skin (petechial hemorrhage)
· Nose bleeding with little or no trauma.
· Sweating a lot at night
· heavy menses
· Difficulty in breathing on exertion or even at rest
· Dizziness and faintness can occur with increasing anemia.
Causes of Leukemia
Causes of this cancer are not fully understood but like many other malignancies the problem arises due to harmful mutation in the DNA. In this case there is proliferation of abnormal cells that finally overwhelm the few normal ones and at that time signs and symptoms of the disease manifest.
· Genetic disorders. People with Down syndrome are affected more.
· Family history of the disease.
· Previous exposure to cancer treatment using cytotoxic drugs and radiotherapy.
· People with Myelodysplastic syndrome – a blood disorder whereby immature blood cells in the bone marrow don’t progress to maturity.
· Infection with the Human T-lymphotropic virus-1 (HTLV-1)
· Exposure to toxic chemicals like benzene which is used in many industries.
· Males are affected more than women.
Diagnosis can be incidental when other routine tests are being carried out. History and physical examination can also lead to a working diagnosis of leukemia. To confirm the diagnosis, the following can be done:
· Blood analysis may reveal the abnormal cells.
· Bone marrow biopsy examination will show a true picture of the leukemia and the type if it is present.
The treatment used depends on the age, the type of leukemia and how other parts of the body are affected. The general health of the patient must also be considered. Broadly, the treatment involves:
· Drug therapy (chemotherapy). There are oral and intravenous preparations.
· Targeted therapy.
· Biological therapy. Here the body’s immunity is modified/boosted to kill the leukemic cells.
· Bone marrow (stem cell) transplant.
· Palliative treatment may involve transfusion of whole blood or parts. Other measures may include dietary steps.
U.S. Statistics for Leukemia - 2014
The total number of all types of leukemia patients was 52380. There were 24080 deaths due to all kinds of leukemia. In the same year there were 18860 new cases of acute myeloid leukemia (AML). 10460 deaths were expected in the same year from AML. AML occurs mostly after the age of 45 and is slightly more common in men than in women.