The Immune Deficiency Foundation: How Do They Help? (Project 2)

Primary immunodeficiency diseases (PIs) are not only life-threatening, but also extremely rare. Individuals with PI face the stark reality of burdensome chronic symptoms and daunting mortality rates, and they can often face this struggle in solitude. It is up to their loved ones, caregivers, and medical professionals to provide unconditional support. But, what are people with PIs to do if they don’t have all the support and access to care that they need to thrive? How can petitioning and outreach on social media by activist groups cause a change in government policies? This is where the Immune Deficiency Foundation (IDF) comes in, as they have helped bridge the gap of disadvantage brought upon those affected by a PI in any form. The IDF is truly a reliable and altruistic organization, as seen in their attempts to support their members, their political involvement, and social media presence.

As previously stated, the situation of individuals with PI and other chronic conditions can present a unique emotional challenge that “changes the way they think about themselves” (Ellison). Unfortunately, studies show people with PI “report inferior quality of life” (Michniacki), are two to three times more likely to suffer from depression (Ellison), and deal with psychosocial aspects that more greatly impact their relationships with morbidity and mortality (Michniacki) than the general population. This can create a vicious cycle in the cases of patients with chronic conditions as a bleak worldview “risks a downward spiral in which a patient may stop keeping up with treatments or other self-care” (Ellison) which can further worsen their condition--creating an even more dismal outlook on life, and so on. The IDF recognizes these particular problems within the immunodeficient community and hopes to alleviate them the best they can with their IDF Peer Support Program. They describe this as “a caring community” that is a “free resource is for anyone personally affected by primary immunodeficiency - a patient, parent or other family member, friend or caregiver” that connects them to trained volunteers who have also been affected by PI in some way. In their article “IDF Peer Support,” they state that “feelings of isolation often accompany the everyday effects of living with a primary immunodeficiency disease” often stemming from “the perception that no one understands what you are going through.” Psychologist Vicki Helgeson would agree with these claims as she explains in the article, “Living with Chronic Illness: Why Some Cope and Others Don’t,” that one of the most important factors to take into account are the “relationships with friends, family and peers.”

Equally important, patients with PI must form a comfortable relationship with their primary care providers. These “feelings of isolation” that were previously described in the IDF’s article “are being increasingly recognized and identified as an area of opportunity for improving care and optimizing overall patient health” by healthcare providers of patients with PI. “Provider Perceptions of Quality of Life, Neurocognition, Physical Well-being, and Psychosocial Health in Patients with Primary Immunodeficiency/ImmuneDysregulation Conditions” is a study in which the quality of life (QOLs) and patient-reported outcome measurements (PROs) were collected to understand the relationship between provider’s perceptions of their patients’ QOLs and PROs compared to them in actuality. They concluded that in order for these physicians to provide sufficient supportive measures to their patients they need “recognition of the negative impact on QOL and PROs” or, in simpler terms, true understanding of the mindset of their patients during treatment (Michniacki). It can often be strenuous to find PI specialists who hold this understanding close to their hearts, so the IDF mitigates this by providing a physician finder on their website that uses geographic location to find the nearest specialist with several customizations available. Search results come back with details such as the specialist’s practice type, whether or not they are seeing new patients, any board certifications, etc. (“Find a Physician”). Using the IDF’s physician finder (as opposed to doing research through some other search engine) adds a layer of merit as it’s “based on data that is maintained in the IDF's database” often sourced from patient and family accounts reported to the organization. Health activist groups do not only have the responsibility of providing hope, or “social support to patient communities;” they also regularly crowdsource health information in a variety of ways in order to support the industry side of things, “health public engagement,” and in turn, further supporting the patient communities with better care (Vicari). With the backing of either other patients or the IDF themselves, this tool ensures that patients seeking help with PI will be more likely to find their fit with a physician recommended by the finder as they are more likely to have a better understanding of the psychosocial issues that notably exist among them. 

Accordingly, their involved activism also plays into “social movement theory” and its relationship to the health field. Vicari mentions Phil Brown’s research, and he says that there are three ideal types when it comes to these activist groups and the IDF checks off each box. The first type is “health access movements” that promote accessibility of services and information. Accessibility is the name of the game for the IDF, with their front page at primaryimmune.org hosting an archive of informative articles, subjects including everything from updates on different health legislations, guides to appealing insurance companies, the physician finder, etc. The second type of social movement is “constituency-based health movements… that ‘address health inequality…’ among social groups” (Vicari). The immunodeficient community is a perfect example of a social group that faces inequality in health care. Many times, people with PI can be denied coverage for immunoglobulin therapies from their insurance company. These therapies are expensive, as they require a large pool of immunoglobulin donors, but regardless, they are a matter of life and death for some patients. Thus, the IDF encourages people with PI to, in a sense, be their own activists, as they have to fight appeals, find doctors that will listen, and understand their own rights. Many resources are available for such issues, including articles such as “Health Insurance Denial: How to Appeal,” “Bill of Rights for Individuals with Primary Immunodeficiency Diseases,” and many more informative and highly beneficial materials. The third type of activist group is “embodied health movements” which take a scientific approach. (Vicari). The IDF has their own research network called PI Connect, “the IDF’s Patient-Powered Research Network.” They address their audience in their corresponding article that PI Connect “can help researchers learn more about PI and how it affects people like you, bringing us closer to a better quality of life, more accurate diagnoses, treatment options and more...by participating in surveys” (Be a Part of Research: How the Data You Submit Advances Research in PI). This, too, relates back to the crowdsourcing subject and why it’s important among health activist groups, especially for the sake of PIs. Since these conditions are unique and rare, much research is still needed in order to improve the lives of everyone affected by them. When groups provide people with these kinds of platforms, it creates a great outreach opportunity that many of their members will be interested in since these patients experience the consequences of scarcely available research related to their illness on a daily basis. Accompanied with a previously established supportive connection (as mentioned by the formerly described ideal types) the IDF will have a loyal subject sample for their research.

One of the many rights Americans have is the right to petition the government. The IDF both creates and features petitions through Change.org to push for better legislation and policies that impact the immunodeficient community. But, do petitions really work? Well, yes and no. While sometimes the desired outcomes of these petitions are not always reached, that doesn’t mean they failed. Sometimes lawmakers are not in the position to make certain changes, no matter how many signatures a person gets. In reality, “the biggest benefit of a petition is raised awareness” (Mele). Usually, petitions alone will not get the job done. Fortunately, however, Mele continues by saying that “...coupling [a] petition with other tactics like protests, rallies, phone calls, face-to-face lobbying, a well-organized media plan, and community outreach creates an environment in which the goals of the signatories can become reality.” At the very least, petitions can put pressure on our government or other organizations to act more responsibly (Kansal). Even when petitions aren’t successful by means of getting desired outcomes, the IDF can use these petitions as a means of “mobilizing supporters and reinforcing their views” (Mele). This political activism is especially important when it comes to health related subjects, because it usually sparks the change that is needed to make a difference in the lives of many people in need. People’s relationships with their own health and their ability to access resources, or biocitizenship, affects how they interact with their fears related to illness. If problems such as these go unresolved, one’s biocitizenship can transition into a state of hopelessness. Activist groups have a considerable amount of responsibility in the healthcare field, as they greatly affect the biocitizenship identities of everyone involved (Petersen). 

Just this year, the IDF called on their members to sign a petition urging Secretary Azar to sign the Newborn Screening Saves Lives Act. This would allow for more immunodeficiency diseases to be put up for newborn screening, which would save lives since some of these diseases do not show themselves until later in life when it’s too late to effectively treat them (“Call to Action”). According to Congress.gov, this act was passed by the House in July, but has yet to be passed by the Senate (Roybal-Allard). Hopefully, House approval is a sign that the Senate is also likely to approve. Any action to get more votes in favor of the act is necessary for the IDF to reach their goal. Even if their petitioning efforts weren’t effective in getting the secretary to act accordingly, at the very least, they know their voices have been heard. They continue to raise their voices, making their stance known by having regular walks and conferences to raise awareness and bring the attention of politicians and board members their way. 

Social media can be a blessing and a curse. In the midst of the coronavirus outbreak, it’s important for people to be getting information from reputable sources. Now, in this this new age where many people get their information online, unreliable sources “who previously had limited access to the public domain” can come to the forefront more easily ”bypass[ing] the gatekeeping function of traditional news media and reach[ing] wide audiences connected through online social networks” (Etter). People with PI are far more susceptible to illness and infection than their healthy counterparts and a pandemic further increases their risk exponentially. With increased susceptibility and a sometimes rather uninformed general public, basic tasks like going out to get groceries can be life-threatening as their immune systems are more vulnerable to not only catching the virus, but also a higher chance of mortality. The IDF has tried their best to do their part during this crisis by putting out reliable information on Twitter as it pertains to their widely affected immunodeficient audience. With so many organizations preying on vulnerable people with gimmicks and trying to profit, it’s good to know that this non-profit has gone above and beyond, replying directly to comments to comfort and informed concerned people.

People with primary immunodeficiencies face specific challenges in their day to day lives. The Immune Deficiency Foundation encapsulates an undefeated spirit that serves their audience to various ends. This includes their support on a personal level, covering aspects like accessibility to physicians and means to improve mental health, their efforts to improve their lives with better healthcare policies on the legislative level, and their informative and encouraging presence on social media. Outbreak or not, the IDF always has their resources available for anyone to access. It can make a world of difference to people affected by PI who need guidance and the IDF makes this world a little better every day.

Reflection:

Starting this assignment, I was really uncertain of whether or not I was going to be able to pull it off. The only other research project I had ever done was junior year of high school, if you could even call it that. Starting the research process off with a topic I was already familiar with and interested in from the first project was a good jumpstart, and having regular feedback from Ms. Turner throughout the process on the research proposal, the second draft, and the annotated working bibliography was also a big help. The collaboration powerpoint I did on Chapter 11 of the textbook also forced me to understand the research process in a way I could better understand. I found myself following the process as described in the chapter, revising previous plans I had made to cover certain topics, brainstorming, and researching a lot of questions related to my topic to get background knowledge. My experience with this project was not the most linear, as I sometimes realized that I no longer knew quite how to work sources I found from when I did the annotated bibliography back into my thesis, or started realizing that some of my points were weak or didn’t fit. While I hope to plan a little better and procrastinate a little less next time around, I’ve come to realize that overplanning isn’t going to help me either. I feel more comfortable now with research and I’m glad I was able to develop my skills in this class so I can go back to this project later on in my academic career.

Works Cited

“@IDFCommunity.” Twitter, Twitter, twitter.com/IDFCommunity?ref_src=twsrc%5Egoogle%7Ctwcamp%5Eserp%7Ctwgr%5Eauthor.

“Be a Part of Research: How the Data You Submit Advances Research in PI.” Immune Deficiency Foundation, 27 July 2018, primaryimmune.org/be-part-research-how-data-you-submit-advances-research-pi.

“Bill of Rights for Individuals with Primary Immunodeficiencies.” Immune Deficiency Foundation, 8 July 2019, primaryimmune.org/bill-of-rights.

“Call to Action.” Immune Deficiency Foundation, 17 Jan. 2020, primaryimmune.org/news/call-action-save-nation%E2%80%99s-newborn-screening-advisory-committee.

Ellison, Katherine. “Living with Chronic Illness: Why Some Cope and Others Don't.” Knowable Magazine | Annual Reviews, Annual Reviews, 19 Nov. 2019, www.knowablemagazine.org/article/mind/2019/psychological-effects-of-chronic-illness.

Etter, Michael, et al. “Social Media and the Formation of Organizational Reputation.” Academy of Management Review, vol. 44, no. 1, Jan. 2019, pp. 28–52. EBSCOhost, doi:10.5465/amr.2014.0280.

“Find a Physician.” Immune Deficiency Foundation, primaryimmune.org/services/locate-a-physician.

“Health Insurance Denial: How to Appeal.” Immune Deficiency Foundation, 9 Dec. 2018, primaryimmune.org/health-insurance-denial-how-to-appeal.

“IDF Peer Support Program.” Immune Deficiency Foundation, 14 Mar. 2018, primaryimmune.org/living-pi-get-support/idf-peer-support-program.

“IDF Physician Finder - Now Available!” Immune Deficiency Foundation, 30 Nov. 2018, primaryimmune.org/idf-physician-finder-–-now-available.

Kansal, Monika, and Ritesh Chugh. “Changing the World One Online Petition at a Time: How Social Activism Went Mainstream.” The Conversation, 18 Feb. 2019, www.theconversation.com/changing-the-world-one-online-petition-at-a-time-how-social-activism-went-mainstream-61756. 

Mele, Christopher. “Online Petitions Take Citizen Participation to New Levels. But Do They Work?” The New York Times, The New York Times, 28 Dec. 2016, www.nytimes.com/2016/12/28/us/online-petitions-activism.html.

Michniacki, Thomas F., et al. “Provider Perceptions of Quality of Life, Neurocognition, Physical Well-Being, and Psychosocial Health in Patients with Primary Immunodeficiency/Immune Dysregulation Conditions.” Journal of Clinical Immunology, no. 8, 2019, p. 805. EBSCOhost, doi:10.1007/s10875-019-00703-7.

Petersen, Alan, et al. “The Shifting Politics of Patient Activism: From Bio-Sociality to Bio-Digital Citizenship.” Health: An Interdisciplinary Journal for the Social Study of Health, Illness & Medicine, vol. 23, no. 4, July 2019, p. 478. EBSCOhost, search.ebscohost.com/login.aspx?direct=true&db=edb&AN=137130387&site=eds-live&scope=site.

Roybal-Allard, Lucille. “H.R.2507 - 116th Congress (2019-2020): Newborn Screening Saves Lives Reauthorization Act of 2019.” Congress.gov, 25 July 2019, www.congress.gov/bill/116th-congress/house-bill/2507?q=%7B%22search%22%3A%5B%22newborn%2Bscreening%2Bsaves%2Blives%22%5D%7D&r=1&s=1.

Vicari, Stefania, and Franco Cappai. “Health Activism and the Logic of Connective Action. A Case Study of Rare Disease Patient Organisations.” Information, Communication & Society, no. 11, 2016, p. 1653. EBSCOhost, search.ebscohost.com/login.aspx?direct=true&db=edsbl&AN=vdc.100037876473.0x000001&site=eds-live&scope=site.