August 27, 2010

The Honorable Kathleen Sebelius 

Secretary

U.S. Department of Health and Human Services

200 Independence Avenue, S.W.

Washington, DC 20201

The Honorable Timothy Geithner

Secretary

U.S. Department of the Treasury

1500 Pennsylvania Avenue, N.W.

Washington, D.C. 20220 

The Honorable Hilda Solis

Secretary

U.S. Department of Labor

200 Constitution Avenue, N.W.

Washington, D.C. 20210

RE: Comments on Interim Final Rules Relating to Patient’s Bill of Rights’ Provisions (OCIIO9994-IFC)

Dear Secretaries Sebelius, Geithner and Solis:

The undersigned organizations representing child health advocates, pediatricians, and hospitals 

appreciate the opportunity to comment on the interim final rule released June 22, 2010, pertaining 

to the patient protection provisions in the Patient Protection and Affordable Care Act (ACA). We 

commend the Departments of Treasury, Health and Human Services, and Labor (the 

Departments) in issuing regulations that provide strong safeguards for families in obtaining and 

utilizing health insurance for themselves and their children.

Nevertheless, we ask that you consider modifying the final rule in very specific areas to ensure 

that the needs of children are adequately addressed in relation to pre-existing condition 

exclusions, lifetime and annual limits, and patient choice of pediatrician and utilization of 

emergency services.

Limitations on Pre-Existing Condition Exclusions for Children

The interim final rule includes an important new reform that will make it easier for children who 

have pre-existing health conditions to obtain health insurance, and as a result, will likely increase 

access to health care and reduce financial strain on families. As you are aware, this provision is 

estimated to help at least 162,000 children get coverage they otherwise would not have, including 

those who are now uninsured and others who have insurance with benefit carve outs and preexisting condition exclusionary periods. We are particularly pleased that the rules clarify that 

group or non-grandfathered individual health plans are prohibited from both excluding coverage 

of specific benefits associated with a preexisting condition for any period of time and from 

denying coverage to a child based on a preexisting condition. However, in order to strengthen the 

rules for children and families, we urge you to consider the following critical improvements to the 

final rule. 
Comments OCIIO-9994-IFC

August 27, 2010

Page 2

o Include excessive waiting periods (those longer than 90 days) in the definition of preexisting condition exclusions so that these children will not continue to face delays in 

access to coverage. 

o Prohibit unreasonable premium increases and/or excessive premiums for families with 

children with pre-existing conditions. 

We also are very concerned about the advisory that was released following the interim final rule 

that allows health insurers to establish “open enrollment” periods for child-only plans. While we 

understand your desire to encourage insurers to continue to offer child-only plans, we believe this 

policy will make it much more difficult for families to obtain coverage for their children when 

they most need it. We urge you to issue a revised regulation that would include strong protections 

for children in the four areas discussed below when a plan establishes an “open enrollment” 

policy. 

First, we ask that you to establish an unlimited initial enrollment period of at least one year, so 

that families have time to learn about the options available to them under the new law and enroll 

in the plan that best meets their needs. We encourage you to consider Massachusetts’ plan for 

phasing in open enrollment as a model for minimizing the negative impact on families that need 

care the most. 

Second, we ask that regulations specify that beyond the initial enrollment period that insurers 

must ensure that open enrollment periods are available to families at least once a year during a 

standardized time period (such as October – December), that the period(s) last at least for 90 

days, and that insurers fully advertise the availability of coverage during these open enrollment 

periods. Establishing these standards will ensure that there is consistency across plans to better 

enable families to access coverage. In fact, without such uniformity, it will be incredibly difficult, 

if not impossible, for families to navigate when and where they can enroll their child into the 

different plans available in their state. 

Third, it is critical that families are given the opportunity to enroll their children into these plans 

when certain life events occur. We urge you to require plans to provide special enrollment 

opportunities for families experiencing a “qualifying event,” such as the birth or adoption of a 

child or a child’s loss of coverage (whether through a parent’s employer, Medicaid/CHIP, 

COBRA, etc.). At a minimum, we ask that the Health Insurance Portability and Accountability 

Act’s (HIPAA) provisions related to special enrollments be applied, with special consideration 

for how the requirements relate to children. For example, HIPAA specifies that a termination of 

employer contribution will trigger a special enrollment. For purposes of child only plans, this 

provision should apply to instances when an employer eliminates contributions toward dependent 

coverage. And fourth, since an open enrollment period makes it even more critical for families to 

stay enrolled in these plans, we ask that the regulations clarify the new procedures that insurers 

must undertake prior to dropping a child from coverage in a child-only plan. 

Without these protections, insurers can make arbitrary decisions about enrollment in child-only 

plans making it difficult for families, especially those with sick children, to access coverage. This 

is contrary to the intent of the ACA and the prohibition on applying pre-existing condition 

exclusions for children.
Comments OCIIO-9994-IFC

August 27, 2010

Page 3

Lifetime and Annual Limits

We strongly support the prohibition on lifetime and annual benefit limits which apply to both 

group and individual plans. For families with children with special health care needs, this is one 

of the most significant changes that health care reform offers and one that will enable these 

families to access the ongoing care that their children require. Additionally, we understand that 

plans may have lifetime or annual benefit limits on non-essential health benefits and anticipate 

additional guidance restricting the extent to which these limits can be applied.

Our primary concern, however, is centered on the schedule for phasing out annual limits, which 

begin with proposed limits of $750,000 for plan or policy years until September 23, 2011, $1.25 

million until September 23, 2012, and $2 million until January 1, 2014. While plans apply annual 

limits less frequently than lifetime limits, families with children, especially those with special 

health care needs, can quickly hit these limits, oftentimes with devastating consequences. 

Anecdotal evidence from the families we work with illustrate that parents whose children 

experience complications at birth can often exceed $2 million in costs even before their newborns 

leave the hospital. Other parents are forced to make drastic decisions such as putting off 

chemotherapy for their ailing children because of the fear of exceeding $2 million in spending 

within one year. While we understand that the proposed annual limits are “minimums . . . [and] 

plans may use higher annual limits or impose no limits” it is has been our experience that once a 

minimum is established, it typically becomes the standard. The starting $750,000 threshold is 

much too low and we urge you to raise the initial annual limits to dollar amounts that are more 

likely to meet the needs of children and families, with an initial limit at or exceeding $1.25 

million. At the same time, we urge you to require that families be notified when they are 

approaching the annual limit and that they are informed of other coverage options available for 

their children, including Medicaid and CHIP. 

Additionally, health plans often impose non-dollar limits on families, such as limits on days in the 

hospital, number of doctor visits, and drug refills. We urge you to issue a final rule that clarifies 

that limits on the duration and scope of coverage fall under the general ban on lifetime and annual 

limits under the ACA. Without such a clarification, we are concerned that insurance companies 

will simply replace their current dollar limits with annual or lifetime service limits, thus 

nullifying the effects of these important consumer protections.

Furthermore, we are concerned that the regulations allow for the establishment of “a program 

under which the requirements relating to restricted annual limits may be waived if compliance 

with these interim final regulations would result in a significant decrease in access to benefits or a 

significant increase in premiums.” In order to ensure that children are not unfairly denied access 

to health care, it is critically important that the needs of children, especially those with special 

health care needs, be addressed as you develop guidelines on this waiver process.

Patient Protections

We support the new rule that requires plans to allow a parent/guardian to designate a participating 

pediatrician as their child’s primary care provider. This is an important provision for children as 

regular pediatric care has been proven to improve child health outcomes, avert preventable health 

care costs, and limit delays in care. To ensure that this provision is most effective for families we 

ask that you make two additions to the final rule. First, the rule should stipulate that plans educate 

their members about this new option, including providing members with an updated list of 

pediatricians in the network. Second, pediatric subspecialists should be included in the definition 
Comments OCIIO-9994-IFC

August 27, 2010

Page 4

of pediatricians that can be designated as a primary care provider. For some children with serious 

chronic conditions, pediatric subspecialists (such as pediatric oncologists) oftentimes provide 

children with their routine and ongoing care and families should be afforded the ability to 

designate them as the primary care provider.

The rule that requires plans providing emergency services to eliminate the need for prior 

authorizations, even when the services are out-of-network, is extremely important for children. 

Children need access to emergency departments that are appropriate for them. Prohibiting plans 

from imposing administrative requirements or limitations on benefits for out-of-network 

emergency services that are more restrictive than those that apply if the family stays within 

network will encourage families of children with special health care needs to seek the emergency 

care most appropriate for their child. Therefore, we ask that the final rule clarify that children’s 

hospitals be included in this important protection.

In closing, we urge the Departments to look closely at ways to ensure successful monitoring and 

enforcement of each of these important provisions for children so that the promise of health 

reform for them will be realized. Current insurance monitoring and enforcement rules are largely 

reliant on states and identification of issues by consumers. However, with the number of changes 

that insurers will be required to make under the ACA, we believe that there must also be a clear 

federal role in monitoring and enforcing plan compliance. 

Thank you very much for your attention to the views of our organizations and the needs of 

children in your consideration of the final rule. 

Sincerely,

American Academy of Pediatrics

Children’s Defense Fund

Family Voices

First Focus

Georgetown University Center for Children and Families

March of Dimes

National Association of Children’s Hospitals and Related Institutions

Voices for America's Children