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Ryan White & ACA: A Client Navigates the Health Insurance Marketplace

February 12, 2014


Client navigates health insurance marketplace

Michelle has new health insurance at a premium she can afford. Her HIV drugs, however? On her salary? Impossible. And where does she go for care?

The story below offers a peek into the world of Ryan White clients and front-line staff across the nation—the challenges and solutions they have in managing transitions to new Affordable Care Act coverage. Their issues are straightforward. Where do I get good care and how much will it cost?

Those simple goals run up against the health insurance marketplace, byzantine long before “Obamacare” came about, presenting challenges beyond all-important concerns over tiered access to HIV medications.

Just ask any service worker or small businessperson without the comfort of group coverage. You are navigating along a rocky coastline, although dramatically less so with Affordable Care Act provisions like standard of coverage in the form of Essential Health Benefits and prohibitions on preexisting condition exclusions.

Motivated Consumer, Complex World

Let’s look at how Michelle (not her real name) got to where she is today. She lives in a state that is not expanding Medicaid eligibility. Nonetheless, she’s in the marketplace given her income. Participation by people like her creates a larger pool of insured individuals that is essential for ACA success.

Since becoming infected several years ago, Michelle has relied upon Ryan White as her only affordable—and available—option. She earns enough to qualify for tax credit/subsidy support in a silver ACA plan and heard about new Affordable Care Act insurance options. She picked a plan after talking to a coworker but didn't seek input from her Ryan White provider.

Michelle faced the following challenges:

  • Her HIV medication co-pays will increase tenfold above the $15 a month her Ryan White coverage provides
  • She’ll have to go to a specialty pharmacy that’s not in a convenient location
  • And she has to find a new primary care team, as her Ryan White clinic isn’t part of the HMO plan she chose

One more thing. Michelle has signed up and needs help with co-pays or help in picking another plan that’s going to be more affordable and convenient. Oh yeah. Michelle needs to act fast as her plan start date has arrived, although she’s been told that (in her state) she can still switch during open enrollment as long as she doesn’t pay the premium.

Removing Roadblocks

Michelle has been laser-beam focused on staying in care. She has been asking people for guidance and answers and even contacted us via this site's Help Desk—a service normally involved with grantee matters—luckily, right after our technical glitch of errant messages was corrected. She is going to stay in care.

She is pursuing the “gold standard” of the HIV/AIDS Continuum of Care of fully engaging in care to maximize individual health and stem the further spread of HIV, according to Tom Donohoe of ULCA and Pacific AETC network, who works with providers on learning about ACA implementation issues for clients (see sidebar case studies).

Why does such a highly motivated Ryan White client face so many complexities in transitioning to new coverage? The question is moot in terms of who Michelle did or did not consult, who among the army of part-time and quickly trained enrollment assisters absorbed the details of her new coverage and the advantages/challenges she faced, and what phone calls went unanswered. Let’s talk solutions, gathered from people across the Ryan White Community.

Help with Drug Co-Pays

In response to the Help Desk's request, the state’s ADAP coordinator came back in less than 24 hours with a name and phone number of a clinic that is managing enrollment into medication assistance in Michelle's area. Getting lined up for co-pay help will require her to travel many miles to sign up at the clinic.

Michelle is not expecting to be pampered.She’s has a car and has an appointment to sign up. She’s already in the system at the clinic, having gone there for a special procedure in the past. Most ADAPs are positioned to help clients with insurance costs.

Additional help is available from drug companies, according to HIV/AIDS advocates, who report that almost all pharmaceutical firms are offering co-pay assistance to individuals with marketplace plans. A potential glitch, however, is that some insurance firms, in a small number of states, are reportedly resistant to accepting payment of premiums from third parties such as ADAPs on behalf of low-income persons, contrary to longstanding HRSA guidance and a clarifying set of FAQs.

Making the Transition to New Coverage

Ryan White clients who are transitioning to individual marketplace or Medicaid coverage need to, first and foremost, make sure they have an ample supply of HIV/AIDS medications until their new coverage kicks in. 

These are important reads, based on the experience of a Ryan White clinic, reporting that “some of our most compliant clients have run out of their meds with the new insurance because of barriers with payment and miscommunication from the insurance companies. We have a staff member dedicated to insurance assistance and she never misses a beat.” Surely, many Ryan White clinics are doing the same.

Accessing Ryan White Help

Ryan White benefits counselors, case managers, and other staff members are the key gatekeepers for Ryan White clients. Michelle’s enthusiasm and her clinic’s enrollment assisters somehow crossed signals but are now in sync. They are exploring her options for sticking with the plan she selected or switching to one that would allow her to remain with her current HIV clinic.

Key issues in Michelle's case:

  • Are the HMO and PPO benefits comparable?
  • What about the costs?
  • Can her Ryan White clinic line her up with HIV expertise in the HMO?

The Bottom Line: Ryan White clients should turn to their Ryan White care teams for guidance. 

Some states have even cross-walked which Ryan White agencies are in plan networks so that patients and providers will know where a patient can receive care, including access to HIV expertise.

Changing Your Mind

What if, like Michelle, you picked a plan and then changed your mind during the open enrollment period? This should not be a problem if your coverage has not yet become effective.

But it becomes complicated after that, according to Malinda Ellwood of the Harvard Center for Health Law and Policy Innovation, pointing to provisions that changes after effective dates are usually allowable only if you qualify for a special enrollment period, regardless of whether open enrollment is ongoing.

However, recent guidance from CMS now allows people who obtain coverage in federally facilitated and state partnership marketplaces and who have paid their first months premium to change to another plan under certain conditions, even if their plans have already gone effect.

To do so the following conditions must be met:

  • The person must change to another plan offered by the same issuer
  • The new plan is at the same metal level and cost-sharing reduction level (i.e., in Michelle’s case a silver plan at the same AV value)
  • The change is made in order to move to a plan with a more inclusive provider network (or potentially other circumstances as allowed by CMS)
  • The change is requested within the open enrollment period

Michelle would contact her issuer directly to do this.

Additional exceptions may be available in circumstances where information provided on or by the plan itself was inaccurate. Individuals in this situation should contact

Once open enrollment is over, in general individuals cannot change health plans unless they experience a particular “qualifying event” triggering a “special enrollment period" (e.g., if you have a child or become divorced, or your eligibility for premium tax credits changes because your income goes up or down). More information about qualifying events can be found on

Changing circumstances clearly are not unusual in this new marketplace as CMS issued new guidance on conditions for making a switch. Added Ellwood, individual states may have add other qualifying events that allow individuals to qualify for special enrollment periods. A cautionary note: simply failing to pay premiums during the year as a way of being able to pick a different plan will not be considered as a qualifying event.

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