Application: Developing a Health Advocacy Campaign
Population Health Issue and Population Affected
The human immunodeficiency virus (HIV) is a virus that can result to acquired immunodeficiency syndrome (AIDS) over time and faster if left untreated. Despite continuous public awareness, infection rate remains high. Is this the case of the population not adhering to warning signs for safer sex? Or awareness and treatment strategies not targeting all areas of the population? This paper will examine the HIV/AIDS population and advocacy programs to address the issue of accessibility to healthcare as a tool to decrease infection rate.
The Centers for Disease Control and Prevention (2015b) reported that in 2011, 1.2 million people in the United States were living with the human immunodeficiency virus with 12.8% unaware of their condition, and 50,000 reported new cases every year. HIV infection is not akin to a certain category of people, but certain groups are at higher risk of contracting the virus. With the latest 2010 report from the Centers for Disease Control and Prevention, the highest rate of infection was seen in gay and bisexual men, other groups were trans-genders, women having unprotected sex with multiple partners, offspring of pregnant women not receiving treatment therapy, and intravenous drug users (Centers for Disease Control and Prevention, 2015b). Looking at infection rate by race, African Americans have the highest infection rate, the Hispanics is an emerging high rate group, American Indians and Alaskan natives are mostly affected due to intravenous drug use, white Americans and Asians are mostly affected due to gay and bisexual men, while native Hawaiians and other Pacific Islanders are not routinely documented due to cultural practices that may inhibit openness to discussions concerning sex (Centers for Disease Control and Prevention, 2015b).
Researched Advocacy Programs
HIV/AIDS diagnosis can be devastating to the patient. Inhibitions to full awareness and therapy in the United States and the world in general may be due to disparities in socioeconomic status and access to treatment. Advocacy programs try to address issues that affect survival rates and further spread of the infection. One of such programs by Igumbor, Scheepers, Ebrahim, Jason, & Grimwood (2011) targeted HIV/AIDS patients in hard to reach areas of South Africa and monitored their loyalty to treatment with antiretroviral medication when followed up with a patient advocate. The work of the patient advocate in this study included testing, counselling on the disease and benefits of adherence to treatment, assessing and addressing factors that may hinder treatment, andpatient follow-ups to ensure that medication therapy is ongoing (Igumbor, Scheepers, Ebrahim, Jason, & Grimwood, 2011).
The results of this study indicated that patients who had advocates had lower viral load as opposed to those who did not. This study brings to fore the importance of holistic care to treatment. The success must have come from the fact that patient advocates sought these patients out in their homes, and also made clinical settings available to them, thereby eliminating the issue of access to care. Furthermore, patients received counselling which can change their mind-set in handling the disease. Patients were made aware of the fact that there is life, even with the infection, and taking antiretroviral therapy would be the key to keeping viral load down, and living a longer life. Patient education and distribution of free medication were also added plusses to the success of the study.
A second study that focused on reviewing the barriers associated with controlling HIV/AIDS in the population ascertained that not having access to healthcare is a serious detriment in controlling spread. A study by Alemnji et al. (2014) focused on the effects that accessibility to laboratory services has on retention and treating patients with HIV/AIDS in Sub-Saharan Africa. This study monitored the retention of infected individuals from the receipt of a positive diagnosis, and the role that being proximal to a laboratory played. It was found out that those patients that were close to a laboratory, and had the privileges of monitoring viral load and CD4 counts, had quick referrals for treatments, and were more apt to adapt to treatment regimen, as opposed to patients who had no ready access to laboratories that were lost in the course of treatment.
This review outlined the weakness of the system in meeting the need of access to healthcare for people with HIV/AIDS, and success when the “need” of access to a laboratory testing center was fulfilled. Another good attribute of this program was the fact that there was adequate collaboration among patients and healthcare workers as regards connecting patients to resources and necessary follow up. This quick linkage resulted in the patients receiving adequate healthcare which led to reduced viral load. One more reason for success was the fact that testing and therapy were made very affordable for patients. When the cost of healthcare becomes a problem, the survival of the fittest becomes the case. Then inability to afford care will correlate with progression of the disease.
Proposed Plan for a Health Advocacy Campaign Seeking to Change Existing Policies Regarding HIV/AIDS Care and Prevention
From the above listed success programs, it is apparent that some of the answers as to why HIV/AIDS is still a concerning epidemic lie in the domain of access to healthcare for infected individuals. In developing an advocacy campaign for this group, the focus will be the uninsured. The Patient Protection of the Affordable Care Act (ACA) has provided some level of health insurance HIV/AIDS patients. I see categories of the uninsured as those who are unable to get insurance through the marketplace as a result of cost, those who were excluded from getting insured due to inability of their states to participate in Medicaid expansion, and the undocumented immigrants. A policy that incorporates the hard to reach areas of the population, like the undocumented immigrants will help to curb this epidemic. The undocumented immigrants especially are a group that may not even know that they are infected and may seek care only when the disease may have already progressed into AIDS, while spreading the disease in the course of their “healthy years”. Furthermore, this group may not even qualify for the Affordable Care Act (ACA) of 2010 as they are undocumented, and may not meet the criteria for enrollment.
The specific objectives for the policy modification will be to provide healthcare access to the uninsured with HIV/AIDS by way of giving coverage to these individuals. A second objective would be to create better public awareness of the disease in order to encourage people to come out for testing. Kates, Garfield, Young, Quinn, Frazier & Skarbinski (2014) reported that out of 1.2 million people living with HIV/AIDS in the United States, 407,000 fall within ages 19-64, 70,000 of these people were uninsured, and 23,000 of these will be insured through the Affordable Care Act, while 46,910 could be insured if Medicaid expansion were to occur in all states. This goes to say that a policy change to expand Medicaid in all states to accommodate those without coverage will be a positive attempt to eradicate this epidemic. To substantiate my second objective, the Centers for Disease Control and Prevention (2015b) reported that less than 40% of infected individuals are regularly seen by a provider, less than 25% have a suppressed viral load (p. 4), while only 270,000 out of 1.2 million infected individuals are aware that they have been infected. This shows that more public awareness is needed to have people know their status and this disease that is fatal if not managed. The medium to reach out to policymakers and ways to influence them will be discussed later in this paper.
How Effective Advocacy Programs Can Help Shape Proposed Advocacy Campaign
The recorded successes of the advocacy programs were rooted in delivered healthcare that had minimal costs to the patients. The advocacy campaign will aim at providing free testing, so that people will be encouraged to get tested, providing free condoms as a means of prevention, providing more laboratory testing centers, especially around areas highly dominated by this group, and extensive counselling services for the newly diagnosed because this is the group that faces an immediate, most critical ethical decision making to tell their partners or not. I will also propagate for each patient to be under the care of a patient advocate who is a nurse. This nurse will follow up with the patient, and ensure that they are not lost in care, until they are competent in managing the disease.
Proposed Policy as a Modification of an Existing Policy
Numerous laws exist regarding HIV/AIDS, ranging from informed consent and circumstances surrounding obtaining it, Health Insurance Portability and Accountability Act (HIPAA) that promotes confidentiality of the patient’s medical records, and laws regarding an infected individual knowingly infecting others (Centers for Disease Control and Prevention (2015c) but the law that I want to focus on is access to healthcare for people with HIV/AIDS through the Affordable Care Act. The Affordable Care Act has made provisions for individuals with pre-existing conditions to obtain health insurance with no penalty from third party payers, of which the law began in 2010 for children living with HIV/AIDS, and took effect in 2014 for adults living with HIV/AIDS (Centers for Disease Control and Prevention (2015a). People living with HIV/AIDS have the option of enrolling in Pre-existing Condition Insurance Plan, qualify for Medicaid in partaking states where they have to earn 133% below the federal poverty line, enjoy benefits from insurance plans without a maximum yearly limit, enjoy the Medicare Part D prescription drug coverage which aids in relieving the cost of the donut hole, and cover preventing health and screening (Centers for Disease Control and Prevention (2015a).
The Affordable Care Act is in place to cover more people with HIV/AIDS, especially those living in the states that adopted Medicaid expansion. Furthermore, infected individuals no longer have to wait for a diagnosis of AIDS to qualify for Medicaid (Centers for Disease Control and Prevention (2015a). I can understand that more patients are covered, but what about the individuals that reside in states that did not expand Medicaid? What about individuals that are unable to afford insurance through the market place due to exorbitant deductibles? What about the undocumented individuals? The infected individuals who fall under these categories will continue to be uninsured and have devastating progression of the disease. For one, the Affordable Care Act does not include undocumented individuals in its Act, they are unable to file taxes, and for this group, there are no laws that exist regarding coverage. If this epidemic is to be arrested significantly, the law on Affordable Care Act regarding coverage for HIV/AIDS individuals should include Medicaid expansion in all fifty states of the United States and Washington D.C., so that more HIV/AIDS individuals will be covered, furthermore undocumented individuals should receive free care. Hard as my statement may seem, this may be the solution to this problem because the risk of contracting HIV/AIDS is higher in lower socioeconomic individuals who may be unable to afford healthcare or expensive HIV drugs (Centers for Disease Control and Prevention (2015b).
Existing Laws and Impact on Advocacy Efforts
With the Affordable Care Act in place, hopefully most of the issues with access to healthcare will be addressed. Obtaining health insurance for this group will be fair according to income. Hospitalizations, physician clinic visitations and costs will be alleviated, but to make medications and initial testing free regardless of site, be it free clinic, laboratory, physician’s clinic, or hospital is a way of luring hard to reach individuals who may not have insurance to get tested. Kates, Garfield, Young, Quinn, Frazier and Skarbinski (2014) reported that the Affordable Care Act is supposed to cover an additional 200,000 individuals through Medicaid and the marketplace combined. This brings down the total number of the uninsured, but the focus should be eradication, not just reduction. My advocacy efforts will target those states/areas without Medicaid expansion, to adopt Medicaid and help fight HIV/AIDS. Public awareness will be geared towards high risk areas, or even areas with a high concentration of undocumented immigrants who will be encouraged to access testing centers with follow up.
Analysis of Proposed Methods to Influence Policymakers
To plead my case, I will join the American Nurses Association (ANA), an organization that keeps nurses politically abreast, and are able to make policymakers aware of the problem at hand (Milstead, 2013). I will use a systematic way that adopts the Kingdon Model of problem, policy, and political streams, and window of opportunity (Milstead, 2013. p. 34). Writing a simple, well-constructed letter, I will present this public health issue in this order. The problem: despite the advent of the Affordable Care Act, a large number of individuals with HIV/AIDS are still not insured, the undocumented immigrants inclusive. This group may not even know that they are infected due to lack of access to healthcare. Successful eradication of HIV/AIDS may depend on covering all areas with awareness and access, of which failing to do, will result in continuous spread. This problem is backed up with data listed on pages five and six concerning individuals not covered under the Affordable Care Act, and the fact that there’s believed to be no data for the undocumented immigrants. The policy amendment is for all states to expand Medicaid to cover individuals not covered from the marketplace. Undocumented infected individuals should have access to healthcare through the government. I will bring to fore the fact that changing the face of HIV/AIDS should be a priority, and unified effort should be adopted in changing this policy which will greatly reduce the cultural disparities seen with HIV/AIDS.
The political stream is very important, if handled well, can go a long way in influencing policymakers for success. Milstead (2013) suggests using lobbyists that include professional, grassroots, and money in the art of lobbying (p. 53). In employing professional lobbyists who will help impact lawmakers on my public health issue, the American Nurses Association will aim at utilizing “revolving door” lobbyists who have served as lawmakers before (Milstead, 2013). Using grassroots lobbying will have the American Nurses Association and the public bring the attention of the Congressmen to the issue. The attention of the public can be sought through conducting a petition drive, where numerous signatures can be obtained in support of the petition to amend the law. Milstead (2013) suggested that timing (window of opportunity) is of essence in trying to advance a political agenda and action should take place when there seems to be the best room for change. This may be the time of election where I will identify with a Congressman who has interests in health related issues that may use my public health issue as a campaign goal. Putting this method in place will not be complete without exploring ways to raise funds to pay lobbyists, and to show support during election. Funding will be done by the members of the American Nurses Association, and well-meaning citizens who share the same interest with me. Money can go into endorsing a candidate that has the interest of my health issue at heart.
Anticipated Obstacles and Ways to Overcome Them
There are different programs that cater for people with HIV/AIDS, some of them are the Ryan White Program and the Centers for Disease Control and Prevention funding that assist with resource allocation according to areas of heavy concentration of the infection like the South (Centers for Disease Control and Prevention, 2015b). However, channeling a good cause often comes with obstacles. Opposition may come in the form of legislators who may suggest that individual states may not have the funds to expand Medicaid, therefore be given their autonomy. Another argument may be that undocumented individuals are in the United States illegally, therefore should not partake in the “national cake”. In handling these two obstacles listed above, the legislators should be made to understand that in failing to expand Medicaid in all the 50 states and D.C., disparities will still occur in the prevalence of HIV/AIDS. Not knowing one’s status, and not getting early treatment have devastating effects. Take for instance the case of Texas, a state that did not expand Medicaid, this state had 5,044 new HIV cases in 2011, making this state the third highest in the United States (Centers for Disease Control and Prevention, 2013). If Texas expanded Medicaid in 2014, some of these individuals will be covered. Texas is a state with a very high number of immigrants who I am sure constitute this high rate of infection, if Texas is concerned about limited state funding in expanding Medicaid, inward search into how resources can be freed up should ensue. Some of which are but not limited to finding ways to avoid duplication of healthcare services, slightly raising taxes to incorporate this group, etc.
The existence of undocumented immigrants cannot continue to be overlooked. This group, I believe are doing menial jobs and helping boost the economy of the United States, but these are largely the individuals that are uninsured and unable to afford healthcare. That is why they will remain undiagnosed, untreated, with a virus they are unaware of, and may only become aware when they have progressed well into AIDS. When this happens, they will still go into a hospital to be treated, which will still incur healthcare costs. These individuals may also not want to seek care for fear of deportation, and I am not advocating for full rights for these individuals, but finding ways to enable them find insurance through the marketplace (for those employed), or enroll in Medicaid to follow up with the disease. Finally, to wage the war against stigma, nurses are always providing quality care to patients, including education. The American Nurses Association and I will be committed to assist existing organizations in providing awareness in the communities. The aim will be to educate on stigma, and to make people know that this disease can be managed for a long time and prognosis is no longer poor if adherence to treatment is high. Disclosure to one’s partner will be another aim, and nurses will help teach safe sex practices, including distributing condoms.
Possible Ethical Dilemmas During Advocacy Campaign
It is envisaged that the advocacy campaign to improve access to healthcare for individuals with HIV/AIDS may be affected by ethical barriers. The campaign will advocate for patient confidentiality, but participants may be worried about partner notification. Due to the stigma and potential emotional abuse that sufferers of HIV/AIDS are exposed to, sufferers may withhold disclosure, but the Provision Seven of the American Nurses Association’s Code of Ethics reported that the nurse owes an ethical duty to the society (Fowler & American Nurses Association, 2008), so it is the duty of the nurse to channel these patients to appropriate partner notification counselling services to assist with the process. One other ethical dilemma that may be encountered with this population in an advocacy campaign is cultural barrier. Language may be a barrier in addressing immigrants. To overcome this issue, the Provision Eight of the Code of Ethics says that nurses should liaise with other healthcare professionals to provide needed healthcare (Fowler & American Nurses Association, 2008). The ethical decision to take is not to allow a family member to offer and give translation during care, to do this will be a breach of patient confidentiality. As the population of the United States is getting rich in cultural diversity, so is the healthcare industry. I will liaise with other nurses or healthcare workers who are culturally competent to assist these patients. Another ethical dilemma that could arise in the advocacy program may also be in the form of knowing a patient who tested positive, and a possible known contact. In handling this, the nurse should follow the appropriate program and state policy on reporting measures.
Ethical Laws and Reporting Requirements Applicable to Advocacy Campaign
People who are positive for HIV/AIDS have their medical records protected by Health Insurance Portability and Accountability Act (HIPAA). Under this law, patients are able to choose who views their records. During this advocacy program, patients’ medical records will be protected and will only be released on consent. Lobbying efforts will be done according to state guidelines. In the state of Michigan, a senator that has left office may not accept reimbursement as a lobbyist, nor a public official (Michigan Department of State, 2012). Financial Reports Summary is filed twice a year by January 31 and August 31 yearly with all expenditure itemized while lobbying expenditures must meet the criteria of payment to influence policymaking and incurred expenses used to gather demographics (Michigan Department of State, 2012). A gift to a public official that exceeds the set threshold amount which is $1000 in Michigan is unethical, and financial exchanges exceeding the threshold must be reported (Michigan Department of State, 2012). Organizations may tend to over-lobby when they have a pressing need. The nurse has a moral commitment to stay within the confines of the lobbying rules.
Ethical Challenges Facing People with HIV/AIDS
The diagnosis of HIV/AIDS can be life changing due to societal stigma. This stigma may be related to the fact that HIV/AIDS is seen as a fatal infection that can be gotten through sex and intravenous drug use which may be seen as immoral. More so, the fact that high prevalence is seen among gay men, intravenous drug users, sex workers. Jeffries, Townsend, Gelaude, Torrone, Gasiorowicz & Bertolli (2015) in their study interviewed men sleeping with men who affirmed that they were faced with discrimination from family who “bleached toilets after they used them”, friends “who stopped being friends”, colleagues at work “who talked behind them”, healthcare workers, “who cared for them with disdain” and the community at large which “ostracized” them. With this stigma going on, it is no wonder people with HIV/AIDS do not want to disclose their infection. Having to suffer stigma from virtually everyone, these individuals may not have the zeal to continue with life, thereby facing loss of essential things in life like job, relationships, dignity and being psychologically stressed. Nurses should be at the forefront of eliminating stigmatization, and this should start within the healthcare setting. Reassurance and encouragement here and there will help this group forge ahead with life while keeping in mind that Fowler & American Nurses Association. (2008) in Provision Three of the Code of Ethics says that the nurse should protect the health of the patient, upholding their safety and rights.
In conclusion, the prevalence of HIV/AIDS continues to be a source of concern, despite the advancement in compressing medications into easier forms to take (thereby increasing adherence to therapy), increased public awareness, and benefits of early testing and management that help prolong life. This may be partly due to the fact that access to healthcare in the United States is not uniform, and among those who are infected are the uninsured who may not even know. The Patient Protection of the Affordable Care Act (ACA) has insured most of these patients, but if all the states do not adopt the expansion of Medicaid, a lot of those living with HIV/AIDS may still not be covered, leaving the health of the infected in this group accelerate into AIDS. It is imperative for the federal government to amend policies and find ways to cover these individuals, non-documented immigrants inclusive. After all, the overall aim should be towards achieving better health outcomes for the public.
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