As Community Catalyst’s Health Equity summer intern, I got to spend some time chatting with Linda Ellis of Georgia’s The Health Initiative about why closing the coverage gap in Georgia, and other states that have yet to expand Medicaid is pivotal for LGBT (lesbian, gay, bisexual, and transgender) elders. As she shared, there was a time when it made sense to focus on LGBT specific services and to think that “we need to specifically care for our own. However, that is not the case today for an LGBT-specific organization in a state with limited resources and support for both the LGBT community and LGBT health care expansion.”

Many LGBT elders have come of age in a culture of rejection from their families and faith communities’ faith. Given the stigma attached to LGBT identities for many elders, they are often a difficult audience to reach. But Georgia’s Voice for LGBT Health is helping overcome these barriers by developing partnerships across issue areas, helping providers and advocates become more comfortable with culturally inclusive language, and addressing risks that LGBT elders and their families face.

Read on to learn more about why LGBT organizations are continuing to engage in health care reform, why outreach and education matter to LGBT elders enrolling in new health coverage options, and how the Diverse Elders Coalition has helped spark a new relationship between The Health Initiative and Georgians for a Healthy Future to ensure LGBT elders remain a point of focus as we continue to implement Obamacare across the country. 

Jessica Liao: Why should the Affordable Care Act (ACA) matter for LGBT elders?

Linda Ellis: LGBT elders can receive low cost health insurance through the ACA marketplace. The amount each individual will save is based on personal income and family size. To find out what someone may qualify for, this chart is very helpful. Unfortunately, in states that decided not to expand Medicaid, the direct financial benefits aren’t as great as they are in states that did take on the expansion. The challenges are greater for transgender individuals, who are even more likely to be poor and uninsured than their LGBT peers, and are often denied coverage or have difficult health care experiences, due to provider inexperience and bias.

The ACA works to directly address many issues experienced by LGBT elders through both providing non-discrimination protections and eliminating denial of coverage based on pre-existing conditions. The only four questions that can impact your insurance rates under the ACA are: the county you live in, your age (and there is a limit to that impact), your family size, and whether or not you use tobacco.

Jessica: What have outreach and enrollment efforts for LGBT elders been like?

Linda: In Georgia, our organization has been tasked with promoting enrollment efforts for the LGBT community at large. We’ve created a “Just the Facts” program that educates those aged 50-64 about ACA opportunities, and those 65+ about Medicare, as well as providing information about Social Security enrollment, financial and legal protections and other senior specific services

Coalition building, developing strong partnerships with mainstream community providers, and inviting all potential partners to join us are the keys to expanding LGBT enrollment. As a result, our ACA Navigators have spent a good deal of time at events that would not necessarily be seen as “LGBT friendly,” and have helped a large number of non-LGBT individuals secure health care coverage as well. That means, though, that LGBT individuals, whether or not they openly identify as such, have seen us in their communities, and that goes a long way in creating a sense of trust.

We’ve met with many LGBT individuals for whom Medicare enrollment remains a few years off who’ve been very pleasantly surprised with the coverage options they’ve been able to secure through the ACA Marketplaces. For example, one gentleman who was over 50 years old, and experiencing some significant health concerns, was able to secure health care coverage for the first time in his adult life. With subsidies, his monthly payment was less than $50. He was seen for a complete physical within a month of his insurance going into effect and had much needed surgery shortly after that. His enrollment through the ACA literally saved his life

Jessica: What are some ways Navigators can ensure that their enrollment efforts are culturally competent for LGBT elders?

Linda: If LGBT elders have a need, they’ve learned to rely on themselves or family members they trust. They have a heightened radar for sensing support – or the lack of it. All of this is compounded for individuals of color. And because the LGBT community can be very youth focused, our elders are often extremely hesitant to identify themselves as “old” or in need of such services. If your goal is to reach LGBT elders, you’ve got to keep all of this in mind, in addition to other cultural competency strategies for LGBT communities at-large.

Also, the best thing to do is to partner with community based organizations, and in some cases, private organizations, and help make referrals to these organizations. It is very important that we establish relationships with mainstream health care providers in order to make referrals to them for an individual who is uninsured or hasn’t seen a medical provider for whatever reason. And, using community based health funds, we try to help cover the costs of care or treatment for those individuals who fall in the Medicaid coverage gap and aren’t able to get health care coverage.

Jessica: Finally, what are some important dates and deadlines for enrolling LGBT elders? What resources are available for LGBT elders to learn more about their options for Medicaid/Medicare?

Linda: This year’s Open Enrollment period begins November 15, 2014 and goes through February 15, 2015. For those enrolling by December 15, insurance coverage will go into effect on January 1, 2015. For those enrolling after December 15, coverage generally goes into effect 30 days after completing the enrollment process. Those who are eligible for Medicaid, however, can enroll at any time, as can Native Americans. Additionally, certain life events, such as employment changes, qualify individuals for enrollment outside of the normal time frame. Individuals can visit this link to see if they qualify for a special a enrollment period.

Last week, Virginia’s General Assembly once again took up the issue of closing the coverage gap, and once again struck the measure down. The primary goal of last week’s special session was to discuss the closure of this gap: Governor McAuliffe’s biggest legislative priority and a huge potential boon for Virginian families. Doing so would make Medicaid coverage available to 400,000 people in Virginia who currently are uninsured, a status that puts their health, their finances, and their futures in jeopardy. Huge political controversy, however, surrounds the issue despite its positive implications for families and for the state of Virginia.

The result of the special session was largely expected; the bill to accept additional federal funds for Medicaid died in the State House, drenched in bitter debate. This loss, however, is not the final blow to this option for Virginia. Advocates must continue and renew their efforts to keep the issue of expanded access to Medicaid on the table. To do this, we must make sure that the collective voice of the many Virginians who would be helped by accepting federal Medicaid funds is part of the policy debate. Policymakers must understand how this decision will affect families and particularly how it will impact the children of Virginia.

Voices for Virginia’s Children, a Richmond-based non-profit dedicated to championing policies and practices that improve the lives of children, recently developed a document that highlights exactly how closing the coverage gap will impact Virginia’s children. Although closing the coverage gap seems to mainly target uninsured adults, it also hugely affects children because a quarter of those adults happen to be parents. Advocates and policymakers need to take into account the ways that closing the coverage gap for parents will benefit children. Let’s review what the evidence tells us:

When we’re thinking about the benefits of closing the coverage gap in Virginia, we shouldn’t only think about those who will become newly eligible for coverage. We should think, too, of the positive ramifications for their families. Parents and their children in other states across the country that have yet to expand Medicaid are also suffering the consequences of uninsurance. We encourage advocates in all of these states to elevate the issue of the coverage gap to policymakers with this family-centric lens, because the coverage gap is not merely an individual issue; it is also a family one.

You can read Voices for Virginia’s Children’s fact sheet for more information about the parent connection here

Pain and Profit

 ·  PostScript

When I retired from my job as associate dean at Brown University Alpert Medical School, I decided to work part-time in community health centers taking care of underserved populations. My first job was in a small city in rural eastern Connecticut. I almost quit after my first week. Up to a third of the patients I saw were seeking prescriptions for narcotic pain relievers like Percocet and Vicodin. Most of the patients didn't have a medical problem that justified opioid pain killers.

I soon learned that a black market in opioid pain killers was a major part of the economy in this depressed city. A nurse told me not to take it personally. "It's their business," she said, "but it doesn't have to be yours." The drug dealers were checking me out as a new doctor in the clinic to see if I was an easy mark. I soon earned a reputation as a hardliner when it came to prescribing narcotics and the number of drug-seeking patients tapered off.

One of my patients was a former prescription reseller and had recently been released from prison. He was very open with me about his former occupation. Pills with oxycodone—the opioid in Percocet—were selling for $5 a milligram on the street. A typical Percocet pill contains 5 milligrams of oxycodone and sells for $25. A recent drug bust in Manhattan reported that a single prescription for 180 30-milligram oxycodone pills could net as much as $7,200 on the street, according to a D.O.J Press Release

The demand for opioid pain killers is huge. In 2010, 254 million prescriptions for opioids were filled in the United States generating $8 billion in sales, making this class of drugs the biggest seller in the U.S. One out of every five doctors’ visits ends in a prescription for opioids—twice the rate in 2000. Many of the pills get diverted to illicit use. Deaths from overdose of prescription opioids have skyrocketed four-fold since the late 90s. In 2010, opioid overdoses numbered nearly 17,000, exceeding the number of overdose deaths from heroin and cocaine combined, according to the CDC.

How did this happen? When I was a medical student in the 1960s, we were taught to be very cautious in the use of narcotics. They were appropriate for short-term use for the kind of pain patients experience after surgery or after breaking a bone, but not for long-term use except for patients dying from cancer who were experiencing severe pain.

At some point between the 1960s and the present, the "conventional wisdom" about pain control and opioid use began to change. I remember hearing in the early 1980s that doctors were undertreating pain, especially in cancer patients. The major limitation of using opioids for extended use in chronic pain is that the body gets accustomed (the medical term is tolerant) to the narcotic and larger and larger doses are needed to achieve the same level of pain relief. Escalating the dose and using the drug continuously inevitably leads to physical and psychological dependence on the narcotic.

Using opioids, especially higher doses, comes with very significant risks, including potential addiction, and death. These risks are outweighed by the relief of suffering in patients dying from cancer. Such is not the case for patients with chronic pain from other causes such as arthritis, backache, or headache.

But drug companies saw that expanding the scope of chronic medical problems beyond cancer would represent an economic bonanza. Without using the names of specific drugs, which avoided scrutiny by the Food and Drug Administration, manufacturers of opioid drugs began to "re-educate" doctors about the benefits and allegedly low risks of using narcotics to treat chronic non-cancer pain.

I remember hearing that patients with pain rarely became addicted. I remember being admonished that good doctors don't undertreat pain and that patients' demands for more narcotics meant that their pain was not being adequately treated and the narcotic dosage should be increased. I remember being told that good pain control with narcotics would restore patients with pain to a normal or close-to-normal life.

All of what I heard as part of this campaign of "re-education" was false. In fact, up to 40 percent of patients taking long-term narcotics become addicted. Studies showed that narcotics didn't restore patients to normal functioning. In fact, nonnarcotic pain relievers were actually more effective in restoring normal functioning. And there are no scientific studies measuring the effectiveness of opioids for pain relief beyond 16 weeks.

Purdue Pharma—the drug company that makes OxyContin—pleaded guilty in 2007 to systematically misleading doctors into believing that OxyContin was less likely to be abused than traditional narcotics. The company paid a $600 million fine and promised to end making false claims, according to the New York Times.

Yet the false messages about the safety of opioids, and the undertreatment of pain are firmly embedded in the minds of many doctors, and will be difficult to expunge. Worse still, millions of patients have now become addicted to chronic opioid treatments. Most will find it physically and psychologically difficult to get off their narcotics. Some may even be condemned to a lifetime of opioid dependence. And as new state laws are starting to prevent the over-prescribing of opioids, more reports are coming in about addicted patients switching to heroin, which can be easier and cheaper to get.

Addiction treatment does work, but there isn't yet enough to help everyone. The Affordable Care Act and advocacy by Community Catalyst, state and national groups and some policymakers are succeeding in expanding coverage, but there is much more to be done.

Meanwhile, the dope-pedaling drug companies continue to rake in their profits and drive up addiction rates. Lawsuits being brought by the city of Chicago and the state of California against five different manufacturers of opioids might possibly start to make them pay for their campaign of deceit.

 Stephen R. Smith, M.D., M.P.H., Community Catalyst physician consultant


As we gear up for the next open enrollment period, it’s worth revisiting the ACA’s provision for former foster youth. Thanks to the ACA, youth who age out of foster care are eligible for Medicaid up to age 26; you can read more about the details of this part of the law here. Although this provision is not quite as expansive as we might have hoped—states are not required to offer Medicaid eligibility to youth who aged out in a different state—it is a significant step forward in supporting a vulnerable population. That said it is up to us to maximize the law’s impact through outreach, education, and enrollment.

Each year, about 20,000 young people age out of foster care. We must ensure that we keep up the drumbeat of outreach to these youth, both as they make the transition to independent living and also later, in the event that their coverage has lapsed. Children’s Action Alliance has done a fantastic job engaging with youth in Arizona to promote Medicaid eligibility for former foster youth, both through written materials and peer-to-peer education opportunities.

The Arizona Youth Opportunities Initiative (AYOI), a project of Children’s Action Alliance, is focused on connecting young people who have experienced foster care to the critical resources they need to be successful in adulthood. Affordable health care is a key asset young people need to be physically and mentally ready for life's journey.

AYOI partnered with young adults to create a Health Care Toolkit. The toolkit contains a fact sheet, frequently asked questions, an outreach card encouraging youth to enroll, and a brochure on how young adults in Arizona can qualify and sign up for health care coverage under the new ACA provision. Through a network of partners, including community colleges, universities, behavioral health organizations, health care clinics, child welfare agencies, and the state Department of Child Safety, the AYOI distributed thousands of brochures and handout cards to help promote enrollment. Moreover, at the annual Arizona Young Adult State Conference, each young adult received enrollment information in their conference backpacks.

AYOI also trained community providers and matched agencies that serve transitioning youth with specific community agencies who assist people in completing health care applications, so these agencies can facilitate a warm handoff and youth can get direct and personal enrollment assistance.

Additionally, AYOI has used its Facebook page, email distribution list, and blog to help spread the word about who qualifies for Medicaid and where to enroll. Currently, the Initiative is working with its Young Adult Leadership Board to create a resource website that will also include critical health care information.

By engaging and empowering former foster youth to participate in developing outreach materials and using a variety of distribution channels to promote outreach, AYOI has ensured that former foster youth in Arizona know about their eligibility for Medicaid and have the resources they need to get covered. We encourage other advocates to check out Arizona’s toolkit and consider replicating a version that works for their state!

Kate Lewandowski, Senior Policy Analyst
Meghan Arrigo, Manager, Arizona Youth Opportunities Initiative

As we enter the fall of 2014, the window of opportunity to influence what benefits are required in Marketplace plans is opening. While the essential health benefits (EHB) package is already set for 2015, advocates have the opportunity to influence the EHB in the future. Although 2016 may seem far away, it is not when you consider the 2016 health insurance plan development timeline. The back-and-forth communications between insurers and departments of insurance will most likely start in the spring of 2015. The plan development timeline therefore pushes the advocacy timeline even earlier, shifting our attention to, well, now. So what should consumer health advocates be thinking about as they ponder a future EHB standard? Demand that decision makers get consumer input right.

EHB Take 1: Where did we end up?

In an interesting twist, the Department of Health and Human Services (HHS) delegated the task of EHB development to the states in response to the Institute of Medicine’s study of a potential EHB standard. In this “hot potato” hand off,  states suddenly became the central decision maker as to what benefits would be included in their state EHB – within some boundaries, of course, set by HHS. States selected (or defaulted) a benchmark or reference plan from a list of plan options (three largest small group plans, three largest state employee benefit plans, three largest federal employee benefit plans, and the largest commercial HMO). You can read a refresher here.

In the final tally, the majority of states opted to use the largest small group plan for the benchmark. Advocates were frustrated by this outcome and overwhelmed by the process, which gave them no transparent path to provide the consumer perspective. As we head into the next selection process, we remain concerned about some key substantive challenges. These include but are NOT limited to how plans set limits on numbers of visits within benefit categories; how anti-discrimination provisions are (or are not) enforced on the federal level; how habilitative care (a new important benefit category especially for children and people with substance use disorders) is defined at the state level; how pediatric services are represented across all benefit categories; and how women’s health services are included in plans. These challenges are outlined in greater detail here.

Common frustrations for advocates from the 2014 EHB process included little or no state engagement, a lack of transparency about plan details, and no clear way for consumers to weigh in. While there were efforts to hold forums and/or offer comments, this was not consistent across states and they were often not fruitful because forums evolved into loose feedback sessions without clear agendas or facilitation.

Over this past year, advocates have continued to monitor how the EHB is or is not working for consumers. This work, largely without access to needed data, relies on consumer feedback, appeals, complaints, and input from assisters and Navigators—all of which, when pieced together, tell us the story of EHB. However, without a clear and transparent process, it will be challenging to influence the EHB moving forward. It is time to re-engage with stakeholders and openly discuss how to have a robust and transparent review of the EHB and determine its future. Advocates in Florida are beginning to think about how to have more public conversations about their state’s EHB to avoid what happened in 2012, when Florida leaders failed to choose a benchmark plan and defaulted to the small group plan option. Their proactive approach advocating for transparency in reviewing EHB provides us an example of how other states can jumpstart engagement with stakeholders.

EHB Take 2: Florida advocates demand consumer input.

As we move into the next phase of planning, Florida advocates remind us that we need to return to our overarching principle around EHB: a transparent, consumer-driven process that results in a robust benefit package for all consumers. Consumer health advocates can play a vital role in elevating consumer experience and informing the future shape of EHB. Advocates must elevate consumer stories and identify effective vehicles to amplify them to decision makers at the state and federal levels.  

This past month, KidsWell Florida, led by Florida CHAIN, urged Florida Insurance Commissioner Kevin McCarty to use his authority to convene a workgroup tasked with reviewing and making recommendations on the state’s EHB package in time for the 2016 plan year. Advocates reached out to their coalition membership, encouraging them (and their partners) to sign on to a letter requesting that Commissioner McCarty play a proactive role reviewing its EHB package. Included in this request was a specific ask for consumer representation in a workgroup convened by the commissioner to review Florida’s EHB package.

While EHB differs among our 50 states, so do key concerns about EHB state level details. Florida advocates are particularly concerned about habilitative services. Advocates see a potential EHB workgroup as one vehicle to voice concerns about how habilitative services is defined and its impact on some populations – specifically, concerns about children’s access to critical health services. Given the possibility that any changes to EHB will require policy changes, Florida advocates are wasting no time engaging supporters and key stakeholders. So far, more than 25 Florida advocates, organizations and providers have signed on to the letter. And in late August, advocates from Florida CHAIN delivered and presented the letter to the commissioner at the Florida Health Insurance Advisory Board meeting.

Florida advocates’ approach provides one example of how state advocates can prioritize consumer issues as we all prepare for EHB: Take 2.