January’s enrollment updates tell us that the total number of those enrolled in Marketplace health insurance coverage hovers above two million. Another 3.9 million individuals have been determined eligible for state Medicaid and CHIP programs. And we know that more consumers are enrolling every day. Despite the slow start, this is all enormous reason to celebrate!

But, the celebratory enrollment numbers also give us the fodder to keep going, to keep finding those individuals and families who have all too frequently been denied coverage and care in the past. We don’t yet know the breakdown of how many people of a certain demographic subset have enrolled. But we do know that Navigators, Certified Application Counselors, and other enrollment specialists have been targeting communities who have disproportionately higher rates of being under or uninsured. Whether it’s ensuring that enrollment materials are translated into languages other than English, that mixed-status immigrant families know that one family member’s eligibility will not hurt others’ immigration statuses, or that LGBT (lesbian, gay, bisexual, and transgender) couples have access to Marketplace tax credits no matter what state they live, the need for culturally competent enrollment resources remains ever present.

Prior to Marketplaces opening, Medicaid expansions launching, and coverage beginning on January 1, more than 800,000 LGBT Americans were without health insurance. While we don’t yet know the dent that the last three months have made, there’s more work to be done to continue to reduce this number. We know that enrollment specialists need information about culturally competent enrollment practices, and the opportunity to learn new ways of making sure all consumers feel safe when selecting coverage.

In fact, when the Marketplace in Texas first opened on October 1, one enrollment specialist recalled being able to help a transgender consumer explore health insurance options because of such materials. Despite website glitches, Anne Dunkelberg of Texas Public Policy Priorities was able to support this consumer through the use of culturally competent tools, such as using the consumer’s preferred pronouns (she), and discussing that the consumer would not face discrimination in denials or pricing because of her gender identity. Anne was also able to encourage the consumer to engage in some additional research to determine which plans would cover her needs.

To read about more ways that enrollment specialists can actively support lesbian, gay, bisexual, and especially transgender consumers, check out Community Catalyst’s new LGBT Cultural Competency Brief. It’s a compilation of best practices already put into place by LGBT advocates and ally organizations such as Raising Women’s Voices, the Callen-Lorde Community Health Center, and Out2Enroll. 

Just as diverse coalitions play a significant role in bringing about policy change, diverse groups of stakeholders, especially those affected by the policy, offer much to a policy-change campaign. By building a system of advocacy and forming broad-based multi-stakeholder coalitions, consumer health advocates can increase their credibility within the community, impact change, and lay the groundwork for future campaigns.

These practices have been increasingly effective in advancing the Dental Access Project’s campaigns. With strong representation from communities of color at both the organizational and grassroots level, advocates have been able to further bridge the gap between consumers, service providers, themselves and policymakers to ensure that those enacting policies hear the community’s voice. As a result, the successful partnerships the campaigns developed have helped advance campaigns in Ohio and Washington to expand dental teams to include a mid-level provider.

Where there are no dentists…

Approximately 83 million people lack access to dental care, largely due to a shortage of providers. Communities of color, low-income children, and people living in rural areas are some of the most hard-hit populations, given the prohibitively high cost of care as well as the shortage of dentists in many areas around the country.

To address some of these disparities, Community Catalyst, with support from the W.K. Kellogg Foundation, is partnering with state consumer health advocates across the nation. The Dental Access Project has built a campaign around empowering community groups and consumer health advocates to work toward improving access to dental care through the inclusion of mid-level dental providers called dental therapists. The project is working to include culturally competent dental therapists on dental teams in Kansas, Ohio, New Mexico, Washington state and Vermont.

We have worked closely with our state partners to help them advance successful campaigns by building cross-sector coalitions that include faith-based organizations, community members and businesses. These coalitions engage partners throughout all stages of the campaign, recognizing various roles from the grassroots through to the grasstops, and empowering individuals to influence and implement changes in their communities.

Lessons learned in creating a successful campaign:

1. Use value-based messaging to both educate and heal tense racial divides – Create messaging frames to focus on big picture concepts to speak to people’s concerns and commitments. These include “big tent” ideas such as promoting the belief that everyone should have access to dental care, rather than focusing on the disparities particular populations face. By emphasizing that most people face difficulties in obtaining oral health care, advocates can build bridges between communities. Advocates have found that messaging that includes personal stories also creates an emotional connection, and can help in developing new advocates. For example, our partners at UCHAN Ohio developed the “Shine a Light on Dental Access” listening tour to increase knowledge of dental access issues by sharing personal stories that appeal to a wide range of potential partners.
2. Engaging and activating community messengers – Over the five days of the Shine a Light on Dental Access tour, dental health advocates in Ohio met with 61 consumers, capturing their stories through a variety of mediums, including story cards and postcards, as well as video-taping interviews. These individuals were encouraged to share their stories, discuss their own backgrounds, and the limited access to dental care they experienced to personalize the campaign. Following the program, advocates developed a speakers bureau training program to create a new level of activism for the project. Participants are trained to find their voice as advocates, and given tips and techniques to refer to when writing a letter to the editor, speaking to their legislators, or organizing community meetings to identify access issues. Lending real credibility and engagement to the campaign, community members shared their personal stories about limited oral health care through letters to the editor, contacting their legislators, or by participating in press conferences at the state house.
3. Strong community relationships create significant policy change – With policy work changing so rapidly, it is easy to miss opportunities to engage the community. Identify leaders and key stakeholders in the community to learn more about their story. This encourages the community to become embedded in the advocacy work that is required to move a campaign forward. Check out our “Ten Tips for Engaging Communities of Color in Policy Change”.
4. Build an internal commitment to health equity – The Children’s Alliance in Washington State, a Dental Access Project partner, is committed to undoing institutional racism. This decision has influenced the organization’s outlook on all of their work, and moved the organizational leadership to create a strategic plan in 2010 solely dedicated to closing equity gaps. Their commitment is now the driving force behind their focus on increasing access to oral health care. The Children’s Alliance continues to monitor and evaluate their equity work to keep themselves accountable to the goal they have set.

Whether you are just starting out, or you have been actively engaging diverse coalitions, we encourage you to continue this important work. For more information and resources on health equity, visit our Health Equity issue page.

I kept thinking I wouldn't have to write this blog because people would figure out that all the hand wringing about adverse selection in the Marketplaces was just a tempest in a teapot. The press has been so bad on this that even estimable Kaiser Health News (KHN) wrote, "Getting enough young adults to sign up for coverage is critical to keeping the marketplaces financially viable by subsidizing the older and sicker people who are gaining coverage because insurers can no longer turn people away for pre-existing illnesses or charge them higher rates. If too many sick people buy insurance, it could lead to higher rates in future years that could eventually compromise the market." Shortly after the Kaiser Family Foundation (KHN’s patron organization) released a report showing fears of a death spiral were greatly exaggerated.

I guess the key word here is “eventually.” We are years away from needing to worry about this, but even if enrollment of young adults is only half of what was originally anticipated, the Kaiser Foundation study shows that the impact on premiums will only amount to a couple of percentage points. Hardly a disaster.

The light does seem to be slowly breaking on the mainstream media (not that I expect any mea culpas any time soon from all the reporters who hyped this story line). For example, a recent Washington Post editorial says, "Failing to reach that goal [40 percent of enrollees between the ages of 18-34] could — but is not guaranteed to — encourage insurance companies to raise premiums next year, deterring even more healthy people from signing up. " (Emphasis added.) Progress of a sort, I suppose.

As tempting as it would be to lay the blame for perpetuating this misleading narrative on bad reporting or (even better) on the critics of the ACA, the truth is proponents bear much of the blame. In particular, the palpable anxiety of the White House concerning the composition of the Marketplace risk pools has only served to validate the perception that we have a problem (or might have a problem if some magic number of young invincibles don’t sign up for coverage right away). This has led not only to bad press coverage, but also to bad policy decisions that have harmed the ACA and may have done lasting damage to the President’s credibility.

The source of all of this angst is the misapplication of what we know about how unreformed insurance markets operate in the radically different environment post-ACA. Let’s start by looking at how things worked in the bad old days and then look at how the ACA changes things to prevent an insurance death spiral.

Old rules of the game

The way insurance worked prior to the ACA, if you started a new insurance pool that attracted initial high risk participants it would be, in all probability, doomed. The high initial price would discourage healthier people from enrolling in year two. Insurer expectations that future enrollees would be sicker than average would prompt them to raise premiums higher still. The result: a continuous self-reinforcing cycle of bad expectations leading to bad results, leading to still more bad expectations. In other words, a death spiral.

New rules of the game

Fortunately, for many reasons, this sad story bears no resemblance to life under the ACA. Let’s take a look at why.

It’s the tax credits, stupid

At this point, it appears that about 80 percent of Marketplace enrollees are coming in with a subsidy. That means that what they pay is totally a function of their income, not the underlying risk pool. Whether the other insureds are all age 28 and healthy or age 62 and sickly makes no difference to what I will pay if my income is under 400 percent Federal Poverty Level.

Past performance is not an indication of future results

As we said, under old rules a bad start likely means a short unhappy life to the new pool. But under the ACA, things are completely different. The key is no new enrollees can enroll in non-ACA compliant plans. Once the old plans are closed to new enrollees, they will die a natural death because every year there will be fewer enrollees and those enrollees will be sicker. Over time, this will erase the incentive to remain outside the Marketplace insurance pool. With other options foreclosed, future incoming Marketplace enrollees will include the healthy as well as the sick. In other words, under the new rules bad risk in year one means better risk is coming in year two.

It's the penalties, stupid

Part of what drives that healthier risk into the market is that that the penalty for being uninsured goes up over time. Starting at the greater of $95 or 1 percent of income above the tax filing threshold in year one, and increasing to 2.5 percent of income by 2016. As the penalties become more substantial, so too does the incentive to enroll.

The American Action Forum’s recently released study showing that the majority of young people will get back less in benefits than they pay out in premiums and cost sharing, is irrelevant. It indicates only that either they don’t understand how insurance works or they are hoping that other people don’t. In the world according to the AAF, if you pay premiums and don't file a claim that is more than the premiums you pay in, you are a “loser”. Someone needs to tell these guys it's not like the lottery. You have insurance to cover you in case something bad happens. If you never file a claim, that makes you a winner (and very lucky). The AAF study just shows that young people are less likely than older people to have significant health claims (let’s see, how do I spell “duh”). I’m sure the Koch brothers will be happy to pay the health claims for those young people who gamble on going bare and get stuck with a catastrophic bill.

Built in stabilizers: Comes with training wheels

But wait, there’s more. The ACA contains provisions to help stabilize the new insurance market as it gets off the ground. These include a reinsurance mechanism to limit insurers liability for any individual enrollee and a “risk corridor” to protect insurers against substantial losses if they under-estimated the health needs of their enrollees as a whole. In any likely scenario, the risk corridor limits insurers losses to a quarter of what they would otherwise be while, according to a recent Milliman study, the reinsurance provision in particular makes it more profitable for health plans to enroll older adults than younger ones.

Rate regulation

It is possible that insurers might respond to higher than expected health claims in year one by baking an unreasonably high trend factor into their year two rates. That is where regulators (and consumer advocates) have to be vigilant. But because the built-in stabilizers will attenuate any losses and because they are competing for market share, insurers will be reluctant to jack up rates in year two. What if regulators don’t do their job? The minimum Medical Loss Ratio will force insurers to pay rebates if they overestimate claims trend.

The dog that didn’t bark

Here is the real kicker—the whole adverse selection story line is based on the assumption that insurers made the same enrollment assumptions about the risk pool in year one that White House did, but there is actually no evidence I know of that they did. In fact, the opposite appears to be true. I haven't seen any stories about insurers sharing their actuarial assumptions and comparing them to enrollment data, and I don’t expect to. At this early stage, any such comparison would be totally meaningless, but don't hold your breath for that story after open enrollment closes either.

While pundits and politicians fret, the insurers are remaining quite calm about enrollment and selection. The CEO of Wellpoint describes himself as cautiously optimistic while the CEO of Aetna recently said the demographics are looking better than he expected. Maybe this is because they are comfortable that they made a reasonably accurate bet on first year demographics, or maybe it is because they anticipate doing well on older adults per the Milliman study. But, in any event, the fact that insurers are not squawking should tell you something.

Recap: Much ado about (literally) nothing

So, even if initial selection is not all that some have hoped for, there will be no impact on the 80 percent who are subsidized; the increasing penalties, natural turnover and deteriorating risk pool in the closed books will sweep in the others over time. Also, the built-in stabilizers and insurers’ desire to retain market share (and not pay rebates) will keep premiums from spiking while the kinks are worked out over a period of the next several years.  

The damage done

Now for the bad news. Fear of adverse selection is what seems to have driven administration policy on the kind of chintzy grandfathering provision that led to many plan cancellations. While I think Politifact went way overboard in calling it the “lie of the year”, certainly the public had no idea of all the asterisks that were attached to “if you like your plan you can keep it.” The administration made it unnecessarily difficult for plans to keep their grandfather status because they wanted those healthy enrollees in the new Marketplace right away. That in turn led to the whole plan cancellation debacle (which of course was made much worse by the massive tech fail).

Even though the website is working much better now and a lot of people who got cancellation notices are able to find alternative, and often better and cheaper, coverage, the whole thing left a bad taste in the public's mouth. That could influence political races down the line that could turn on the public’s perception of the ACA.

So what now?

Unfortunately, we don't get a do over. The main thing we can do, in addition to working to helping implement the ACA as best we can and tell the story of its successes, is to fire back hard whenever someone raises the red herring of death spiral. There’s no shortage of ammunition.

Federal Court in Missouri suspends state laws to regulate federally approved counsellors helping consumers enroll in the federal Marketplace

An important ruling was announced in a federal court last Thursday, temporarily striking down a Missouri state law and regulations that sought to impose additional requirements upon Navigators, certified application counselors (CACs), and counselor-designated organizations working to help consumers understand and access health care coverage under the Affordable Care Act (ACA).

A strong victory for both the advocates on the ground and the Department of Health and Human Services, this ruling says that state laws or rules that seek to regulate Navigators and CACs who are already regulated under the ACA are unconstitutional, if those state law requirements impose "additional burdens" that would frustrate the purpose of the ACA—increasing access and affordability of health care.

“Missouri’s Certified Application Counselors, Navigators and other service providers who work with uninsured and underinsured people are helped by the this ruling,” said Nancy Kelley, Director of Engagement & Advocacy at Saint Louis Effort for AIDS, one of the plaintiffs in the case. “Our goal is to assist individuals as they learn about their options and gain the health benefits of being insured. With 800,000 Missourians still needing coverage, we do not need additional barriers to this work.”

The Court noted that when Missouri declined the opportunity to create an Exchange, or operate one jointly with HHS, the state had in effect "opted not to be in the health insurance exchange business" leaving “the operation of the exchange to the federal government….” After doing so, the state "cannot choose to impose additional requirements or limitations on the exchange. Doing so frustrates Congress’ purpose of having HHS operate [federal Exchange]s in states where no exchange exists."

As a result, the Court voiced the “view that any attempt by Missouri to regulate the conduct of those working on behalf of the FFE is preempted.”

The Court first struck down the state’s licensing requirements, and then struck other state rules that tried to impose "limitations on what State Navigators may do.”

For instance, one state regulation sought to prevent any Navigator from providing "advice concerning the benefits, terms and features of a particular health plan or offer advice about which exchange health plan is better or worse for a particular individual or employer” unless that person was also licensed as an insurance agent under state law.

The Court found this new state regulation was in direct conflict with the federal law requirement that federally certified Navigators and CAC’s provide "information about various plans – which necessarily requires providing information about the differing strengths, weaknesses, and other contrasting features…” The Court saw providing this valuable information health plan options, and their strengths and weaknesses as “indistinguishable from 'advice.’” The Court said that Navigators could not comply with both Federal and State law, so the state law was preempted.

The Court’s ruling temporarily banned the state from enforcing those requirements, pending the full completion of the litigation. Part of the decision rested on the Court’s view that advocates who challenged the law – St. Louis Effort for Aids and Planned Parenthood of the St. Louis Region and Southwest Missouri, among others – had a greater likelihood of winning in the end. So the Court granted them a preliminary injunction, to stop the state law’s requirements from being enforced while the litigation proceeds. While preliminary injunctions such as this are uncommon, the Court concluded that "the public interest is damaged if the state is permitted to thwart federally approved Navigators, CACs and Counselor Designated Organizations from performing their functions…” (See page 15 of the Decision.)

The injunction prevents the state from enforcing the law's requirements or penalties on the "federally-approved Navigators, CACs and Counselor Designated Organizations [that] have satisfied the requirements of federal law…” The Court elaborated that suspending these penalties and other hurdles that CACs and others currently face removed "the state-created specter of punishment and regulation that likely violates the Constitution…” (See page 16 of the Decision.)

What this means to other states.

This initial ruling sets an important precedent. By clarifying that the ACA, as federal law, has the power to preempt conflicting state law, this ruling paves the way for other federal courts to nullify similar state laws or regulations that create barriers, or impose burdens upon, any person or organization that receives federal funding or certification to help consumers use the Marketplace and enroll in health insurance coverage.

If this precedent stands, the strongest impacts of federal preemption would likely be on Federally-facilitated Marketplace (FFM) states – i.e. those that chose not to establish a Marketplace. If these states then try to regulate Navigators or CACs, federal law would preempt, or nullify, those state laws or issued agency rules. If this ruling is followed by other federal courts, it would allow Navigators and CAC’s to focus all their energies on the important task of helping millions of uninsured consumers find and enroll in accessible, affordable health insurance, without hindrance from unfair or restrictive state laws.

Ultimately, this preliminary ruling by the federal Court in Missouri may be the first pebble causing ripples across the nation – a legal victory to set aside restrictive state laws that try to block Navigators and CAC’s from doing critical work to help consumers find their best options for health care coverage. 

Late last year, the Senate Special Committee on Aging heard some very important testimony about how the drug industry needs to be better regulated in order to protect seniors and other consumers from medication labeling mistakes. But the testimony quickly turned to how to make information on drug labels clearer and more understandable to consumers, which is vital given the many risks inherent in prescription drugs.

Recently, I came down with a sudden illness while visiting friends in Central America. As an English speaker with little proficiency in Spanish, I realized that access to good information about the use and benefits of a drug is critical to making decisions about your own care. As I weighed the idea of going to a local doctor or “farmacia”, I realized that I would never be able to fully understand the treatment or drug they might recommend for me in a Spanish-speaking country. If the doctor was not bilingual, I would be forced to rely upon the friend I was visiting with, or her teen-aged kids, to translate. But despite being bilingual in most ways, my friends likely would not have the health and science vocabulary to fully explain the treatment’s risks and potential outcomes. I might not be able to fully understand or evaluate the risks or the warning signs.

I also realized this is the same situation patients and consumers with limited English proficiency face every time they go to a pharmacy in the U.S. Many such patients rely upon their children or grandchildren to translate for them at the pharmacy counter. But it doesn’t have to be so.

Late last year, a broad group of 35 senior, professional, and multicultural organizations wrote to the U.S. Senate Special Committee on Aging, asking the Committee and the Department of Health and Human Services (HHS) to address language barriers during a hearing on “Protecting Seniors from Medication Labeling Mistakes.” Given that approximately 4.1 million seniors who are Medicare beneficiaries are also limited English proficient (LEP), interpretation and translations services by pharmacists are vital to ensuring patient safety, and to empower patients to make meaningful decisions about their care.

The letter from this diverse coalition of concerned organizations asked that HHS work to address the language barriers to access in Medicare and Medicaid programs, while also noting that a number of common-sense solutions are available. For instance, HHS could consider using their rulemaking authority to:

• ensure drug labels and other drug information are translated into multiple languages, and that patients who are limited English proficient are informed how to ask the pharmacist for the information in an appropriate language;
• ensure that pharmacists identify the language needs of their patients; and
• establish policies that incentivize pharmacies  to provide trained interpreter services, rather than rely on the ad hoc assistance of a patient’s own children or relatives, or upon untrained bilingual staff.

A few states, such as New York and California, have passed state laws addressing the safety concerns for patients with limited English proficiency, but neither law has been fully implemented. New York City has implemented rules requiring multilingual interpretation and translation services be provided by all pharmacy chains with four or more branches, thanks in part to a lawsuit by advocates filed back in 2009. (See page 19 here.)

The non-discrimination provision in the ACA (Section 1557) may actually help ensure that drug makers and pharmacists address the language barriers that could put patient safety and care at risk. The law grants Americans protection from discrimination based on race, national origin, age, etc., that could exclude the person from participation in, or deny them the benefits of “any health program or activity, any part of which is receiving Federal financial assistance, including credits, subsidies, or contracts of insurance” etc. This provision grants patients certain civil rights in their access to health care, especially with respect to Medicare and Medicaid, programs financed by the federal government. It expands upon the Civil Rights Act of 1964, which requires that agencies and service providers receiving federal funding must take “reasonable steps to ensure that limited English proficiency (LEP) individuals have meaningful access to their programs and services” (according to this NHeLP report, p.7).

This progress shows that legislators and regulators alike are recognizing that some small changes can go a long way to improve the quality and safety for patients who are more vulnerable due to their national origin. There are also many resources available to pharmacies that make it easy to add translation and interpretation services.

As millions of new patients gain access to care, Medicare and Medicaid programs need to ensure drug makers and pharmacies provide language-appropriate care that will grant these new consumers equal access to information and help them better understand and participate in decisions about their care.