Friday, February 7, 2014
Article: The Founding of Health Justice for Peace Corps Volunteers
The courageous Nancy Tongue, RPCV Chile, has been advocating for herself and other RPCVs who have service-related health issues. John Coyne at Peace Corps Worldwide posted Nancy's amazing story from Peace Corps Volunteer to leader of Health Justice for Peace Corps Volunteers. Contact Nancy at firstname.lastname@example.org or email@example.com and visit www.healthjusticeforpeacecorpsvolunteers.org.
The Founding of Health Justice for Peace Corps Volunteers
I am a trained cultural anthropologist in ethnography and cross-cultural health education. I’ve worked in NYC, the US Southwest and Pacific Northwest with Johns Hopkins University, the Smithsonian, clinics, schools, government and nonprofit organizations with a cross-section of populations including indigenous people and migrant farm workers. My other professional areas are oral history, linguistics and documentary work. I was also the resident director of the NYC Ronald McDonald House for children with cancer and their families. I have a graduate degree in physical therapy, and I currently reside in NYC.nancy-small1
But my path to a professional career has been intermittently impeded by two obstacles: an intense journey through a series of illnesses resulting from my Peace Corps service; and a winding voyage through an historically dysfunctional and ineffective Peace Corps health system. I have surmounted these barriers through extreme tenacity, a good support network, and an immense desire to heal. The road to be “heard” has been long, convoluted and lonely and has taken 29 years. As a result, I created www.HealthJusticeforPeaceCorpsVolunteers.org to improve the system, and provide emotional support and help to those navigating it.
While in rural Chile (1980-82) I lived without running water or electricity at the base of the Andes in a formerly abandoned hacienda, cooking over a smoky open hearth, eating evening meals with the sharecroppers by lamplight. I made life-long friendships with community members and farm workers and I loved my work as a rural development health educator. I traveled on dirt roads by motor scooter to one-room schoolhouses and clinics far into the countryside. The closest Peace Corps Volunteer (PCV) was a day away by bus, so I immersed myself in the local culture.
Around me I saw profound suffering and even death because necessary medical care could not be provided or paid for. I witnessed oppression bred by poverty, classism, and political repression under the Pinochet regime.
I tolerated profound personal and somewhat inconceivable discomforts. These included the rats - they chewed sleeping babies’ lips and gave them grave infections; they pranced across my rafters and dropped fleas into my bed and clothing while their bites left painful inches-wide welts along my waistline and clothing seams causing me incessant fevers; they shared the outhouse with the farmers and me and were impervious to commercial and home-grown pesticides. I burned kerosene and carbonized charcoal transported from town to heat my living space in the frigid winter. I prepared my daily work by lantern in my winter clothes indoors.
I lived under martial law in a dictatorship. A seemingly innocuous comment I made when the radio announced that Reagan was shot caused my room to be ransacked. “Communista” was written across the Pablo Neruda book I thoughtlessly had brought to Chile, forgetting the implications that possession of a socialist poet’s writing could have at that time. I was frisked at several locations at the end of military police’s machine guns the next day, miles away on a muddy dirt road en route to a school. I stood fearful of being raped, or worse, as flashes of the many who had been “disappeared” sped through my brain. A family in town sheltered me behind locked shutters in a back room for some days until a native Chilean Peace Corps representative could be brought in from the capital to reassure the mayor that I was not a threat. Several schools banned me for the rest of my service lest they be accused of the same.
None of these challenges completely surprised me. I willingly embraced my work in the countryside knowing most of the risks involved. It was a life changing experience.
What I did not know then was that the greatest risk in joining the Peace Corps was the potential of becoming dependent on my own government upon my return. The helplessness I experienced when the Peace Corps medical system, and then the US Department of Labor (USDOL) failed me when I became sick paralleled the system that failed the Chilean poor. When I joined the Peace Corps (a federal agency), my parents and I were told that were I to become sick or injured that all bills would be covered and treatment would be provided. I had no way of knowing as a healthy, athletic 24-year-old that the journey to get coverage and get well would still be going on 29 years later, and that Peace Corps would not be willing to acknowledge the extent of my plight, and that of many others, until recently.
Upon my return from Chile, doctors concluded that my ongoing fevers and pain were a result of service. Therefore, my private insurance would not cover service-related issues. The Peace Corps ignored my calls for assistance. They finally directed me to the US Department of Labor (USDOL), which handles all Peace Corps health problems once one returns to the US, after pressure from then Governor Mario Cuomo, to whom my parents had written for help. I wasn’t admitted to NYC hospitals for testing because I couldn’t prove that my claim would be accepted by the USDOL, and I couldn’t prove to the USDOL that my condition was related to my Peace Corps service because I lacked a diagnosis. It was not until the mid-1990s that Peace Corps even allowed returned volunteers to purchase a temporary health insurance plan to poorly bridge that gap. It took months of work to educate myself about how to file a claim and to negotiate paperwork that doesn’t correlate with the work or health situations of a Peace Corps Volunteer (PCV). Other Federal employees have an “employing” agency that is able to mediate this process for them. But RPCVS are no longer employed after service.
Historically, once sick or injured PCVs completed their service (unless sick enough to be medically evacuated) they were literally tossed out alone. Over the course of years, it has been common for the PCV or medical provider to be required to resubmit medical bills upwards of 13 times to be reimbursed. Treatments have taken up to two years to be pre-approved and often only with the intervention of US Senators. It is rare to find a medical practitioner who will accept USDOL payment because of the work and wait time required. Coverage has been capricious, unreliable and inconsistent. Diagnoses are randomly altered by the USDOL or “bill pay unit” where there are no medical practitioners on staff. Some Returned Peace Corps Volunteers (RPCVs) have been assigned separate claims and examiners for each affected body part, when they have one systemic infection. Recently an RPCV was told that her “legs” could return to work while another body part couldn’t. How does one even negotiate this type of Byzantine bureaucracy? The system is infuriating, exhausting and toxic. Many sick volunteers have dropped out because the process of negotiating the system impedes healing. They take out loans, go to graduate school despite being sick, and incur student loan debt simply so that they can access student health insurance to get diagnoses or treatment. Others move in with friends, depend on family or live lives of quiet destitution.
My parents used their savings in an attempt to obtain the best medical help for me; and when I got too sick to care for myself I moved in with them. Eventually, I was diagnosed with a rare tubercular infection, latent meningitis, and chronic systemic infections, which caused physical, emotional and cognitive effects. Some symptoms remain challenges to this day. Each eroded more of my being.
As the years wore on, the struggle to get coverage and approval for treatments surpassed my physical suffering. The management of the billing issues exceeded 40 hours of work each week. The simple maintenance of a claim is laborious and more than many sick returned volunteers can administer. Because of my “pre-existing” illness from the Peace Corps and inability to work full-time, I was ineligible for health insurance in the US. Some attempt to apply for Social Security Disability simply to be able to “purchase” Medicare and a costly supplemental plan. Others have returned to their country of service or elsewhere out of the US where they (in the pre-Affordable Care Act era) were able to obtain health insurance and live decent lives on their meager disability income, which they couldn’t do here. Many have not been able to return to work because they can’t spare the time away from managing their claim to find time to work.
During the decades, USDOL claims examiners have been verbally abusive telling me to “buck up” and “get well,” or stop “malingering” and “costing the system money.” They failed to return calls and with no health background themselves, tried to tell me when I was well enough to work and in what field, at times confusing the Peace Corps with the military suggesting I go back to work in Afghanistan. Federal employees without medical or vocational backgrounds basically determine our incomes, when and how much we can work, who our health practitioners can be - in essence they control our lives.
In my case, over time, pre-approved medical treatments were not paid, liens were placed against my assets, lawyers were hired by hospitals and came after me, my credit rating was destroyed, valued medical specialists dropped me, prescriptions were randomly paid. And still, the Peace Corps did nothing. My medical bill payments episodically stopped being paid without notice, disability payments ceased at one point for two years for no reason and without explanation. And when I returned to work and then relapsed, it took years and congressional intervention to get me back into the system. At times, even Peace Corps medical unit employees also blamed and shamed me for costing them money. My health worsened. My parents began to assume that not only would they lose everything they owned but that they would lose their only child.
In the 1980s many citizens still believed that the “American Medical System” was beyond reproach; that America couldn’t fail me this way; that Peace Corps was an organization to be venerated and not criticized. I was losing my dreams of a career, a life, and most of what I believed in, while there were few who could conceive of my struggles or even relate to me.
As I fought to get well, I sought other Returned Peace Corps Volunteers who were falling through similar cracks. Groups that existed to support RPCVs were not open to negative comments about the Peace Corps. For two decades even the National Peace Corps Association organization ignored me, and others, although we fortunately have their support now.
Through the years I met with or contacted, Sargent Shriver, Bill Moyers, CNN, Michael Moore, Ted Kennedy, First Lady Hillary Clinton while she was in the White House, the staff of 60 Minutes and many others to try to voice our collective stories but our issues were not acknowledged. In 1991 I participated in a Government Accountability Office (GAO) investigation by Senator Inouye to scrutinize the health care of Peace Corps Volunteers (http://www.gao.gov/assets/160/150730.pdf). The investigation documented that care was profoundly lacking and recommendation were made. Yet nothing improved.
I wrote dozens of US Senators and Governors to alert them to problems sick and injured Peace Corps Volunteers faced upon their return. Even the press didn’t want to taint the Peace Corps’ seemingly impeccable reputation. No one dared take on our issues, as the Peace Corps remained protected by an invisible veil. By the time the Internet was in use, many of us had a banded together to seek change. In the mid-2000s we started a Yahoo and then a Google group. 50 or more people were signing our letters to Congress (http://www.scribd.com/doc/9841521/Gregg-2007aug30). All had suffered immeasurably for years. Some had ended up impoverished or homeless.
In 2007 Peace Corps launched, without notice, an investigation by their Office of Inspector General to determine which Returned Peace Corps Volunteers (RPCVs) were abusing benefits. I was personally investigated and asked to hand over my original passport so I could not leave the country. I was required to resubmit reams of medical records and I had to have an RPCV retired lawyer lead me through the invasive process because no other lawyer, including the ACLU, would touch a USDOL/Peace Corps issue. Peace Corps money was spent to fly their investigator to my former town of residence in the West where, without my knowledge, he met with my employers, colleagues, professors, doctors, and friends to determine my personal history and my veracity. He phoned me numerous times to ask me to verify odd facts that he knew about my parents going back 40 years, seemingly to prove that he knew the nuances of my family’s life in an effort to frighten me. I felt violated, angry and completely isolated. He subpoenaed records from my medical practitioners without my permission. Key medical doctors and practitioners then dropped me from their practice because of this invasive evaluation. My aging mother was required to write a legal testament of my history and integrity as this investigator rang my doorbell at unusual hours and continued to track me. I grew afraid to go home for fear of being of illegally arrested. Not only was the Peace Corps not defending me, they implied they suspected me of felonious activity. I was more afraid of my own government that I had been of Chile’s dictatorship when my home there had been ransacked. There, I naively believed that the US would protect me. Now I knew better. In the end I was, naturally, found innocent of wrongdoing, and very little fraud by any volunteers was found (http://www.scribd.com/doc/80488557/OIG-Investigation-Apr-Thru-Sept-2007). I was utterly abandoned by the Peace Corps and believe the money spent on the investigation should have been used to improve their own health case system.
It wasn’t until the stories of women who had been sexually assaulted while in the Peace Corps were broadcast in 2012 on 20/20 (http://www.youtube.com/watch?v=bOnz0YX97Gg) that I regained my momentum. Because of the attention they drew, Congress ordered another GAO investigation of the Peace Corps’ health program (http://www.gao.gov/assets/660/650191.pdf) in which I again participated. As in 1991, it was determined that about 10-30% of all RPCVs develop some type of health issue related to service and that the system was still flawed. Given that 215,000 have served, the numbers are significant. Many hesitated coming forward and “going public” because they feared reprisals from the government - that what few benefits they receive might be revoked, or that they might be deemed unemployable if they state that they have had health issues, or worse, that they would be denied health insurance. Some were already uninsurable in the US. Others had lost viable careers.
By spring 2012 I had heard from hundreds of returned volunteers who were suffering. Some went to the press (http://www.motherjones.com/blue-marble/2012/12/abandoned-peace-corps). More gathered the courage to speak out since they had little to lose. Our collective stories were mounting and I decided to begin an official organization. With the help of the National Peace Corps Association (NPCA), we created a name for ourselves - Health Justice for Peace Corps Volunteers. A board member of the NPCA heard my personal saga and reached out to Carrie Hessler-Radelet, Acting Director of the Peace Corps; she immediately came to my apartment, reviewed my history, believed our stories and expressed a desire to improve the system.
A group member, Patrick McClanahan, and I were invited to DC in December 2013 to meet with the Peace Corps, their legal team, their legislative representative, as well as with members of the House and Congress (http://www.peacecorpsconnect.org/2013/12/forward-movement-on-health-justice). We dialoged with them about our needs, struggles and our progress and learned what the Peace Corps’ Office of Health Services goals are.From meetings on Capitol Hill we gained a better understanding of strategies for approaching policy and legislative reform. Under Carrie Hessler-Radelet improvements are now beginning to be implemented(http://files.peacecorps.gov/multimedia/pdf/learn/benefits/health_progress_fact_sheet.pdf). In 2012 I suggested that she hire a former Peace Corps staff member with whom I had worked for constructive change in the early 1990s, and she did. That consultant was able to integrate information from our organization, as well as from results from a survey we conducted with the NPCA. We received over 7,500 survey responses that were analyzed by our group member, Felicia Kenney (http://healthjusticeforpeacecorpsvolunteers.org/survey/report.php). Our survey data supported the 1991 and 2012 GAO findings and we were able to direct individuals still in need of help to the Peace Corps.
But health care provided to returned volunteers will remain less than ideal until the following occurs: active communication between the USDOL and Peace Corps and an understanding on the side of each about how the other functions; a disability pay scale that is more than a sliver above poverty level; a way for sick and injured RPCVs to re-enter the work force; an institutionalized guarantee that Peace Corps will continue to work on behalf of temporarily sick, injured or disabled volunteers for as long as they need help. In the meantime we serve as a support group for others who feel alone with their health issues and lost as to how to navigate the bureaucracy. We connect people with similar issues to one another and we brainstorm about how to expedite change. If you wish to be added to our confidential email list or are willing to volunteer to help our cause, please contact us at: firstname.lastname@example.org
My journey evolves, as I heal and share experiences with others in this group, working for systemic changes with a Peace Corps that is finally open to dialog. Various medical treatments have arisen through time, creating new options for me. I am eagerly seeking to merge my training and multiple work experiences into a lifestyle that expresses the whole of who I am.