August 26, 2010

Jim Mayhew

Office of Consumer Information and Insurance Oversight

U.S. Department of Health and Human Services

P.O. Box 8016

Baltimore, MD 21244-1850

Attention: OCIIO-9994-IFC

Dear Mr. Mayhew:

On behalf of First Focus, I appreciate the opportunity to comment on the Interim Final 

Rule (IFR) “Requirements for Group Health Plans and Health Insurance Issuers under the 

Patient Protection and Affordable Care Act (PPACA) Relating to Pre-Existing Condition 

Exclusions, Lifetime and Annual Limits, Rescissions, and Patient Protections” (45 CFR Parts 

144, 146, and 147). First Focus is a bipartisan children’s advocacy organization dedicated to 

making children and families a priority in federal policy and budget decisions. Our core 

mission is to ensure that all of our nation’s children are able to get the health care services 

they need and deserve.

First and foremost, First Focus applauds the provisions of the IFR that prohibit insurers 

from unfairly denying patients access to coverage, services, or providers when they are 

needed most. While we understand the importance of ensuring the adequacy of risk pools,

for too long insurers have gone too far in denying coverage for those who are or who 

become sick by rescinding or capping coverage, limiting access to providers, increasing 

premiums and making coverage unaffordable, among other practices. This IFR goes a long 

way toward leveling the playing field for all consumers. We are particularly heartened that 

these reforms will be effective for children under 19 beginning on September 23, 2010. 

We would like to offer specific comments in the following five areas:

Pre-Existing Conditions: First Focus offers its full support for the provisions of the IFR 

which prevent insurers from imposing any pre-existing condition exclusions on enrollees 

under the age of 19 for plan years beginning on or after September 23, 2010. This 

requirement extends to all individuals, regardless of age, for plan years beginning on or after 

January 1, 2014. No child who was born with spina bifida or a congenital heart defect, or 

who develops autism, juvenile diabetes, cancer, or any other illness should face 

discrimination either at the point of enrollment or following enrollment. For the protection 

of patients and consumers, we urge the Administration to develop clear guidelines defining 

the term “pre-existing condition” to prevent continued gamesmanship by the insurance 

industry and to ensure that coverage is available for children when they need it. Along these 

lines, we are also concerned that the IFR may allow insurers to impose excessively long 
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waiting periods for children with pre-existing conditions. This issue also must be addressed 

by the Administration.

Rescissions: First Focus also appreciates that the IFR addresses the rescission practices that 

have become commonplace among insurers which allow retroactive denials of coverage. 

Rescissions are perhaps the most pernicious of the unsavory practices perpetrated by 

insurance companies. An investigation by the House Subcommittee on Oversight and 

Investigation earlier this year showed that the three of the largest insurance providers in 

America had rescinded 20,000 policies in the years from 2003-2007 in California alone, 

saving an estimated $300 million. The investigation discovered that insurers actually 

rewarded employees for canceling the coverage of sick patients. We are heartened that the 

IFR makes it clear that these despicable practices are no longer permissible.

In addition, we are pleased that the IFR makes it clear that coverage must continue while an 

appeal is in process. To ensure a fair and comprehensive appeals process, we urge the 

Administration to set in place a second-level external review outside of any internal medical

review to allow the law and the facts of a particular denial to be considered on behalf of the 

consumer. 

Annual and Lifetime Limits: First Focus appreciates the acknowledgement in the IFR that 

lifetime and annual limits have posed significant barriers to care for scores of Americans 

with private coverage. While we understand the importance of maintaining stability in the 

insurance marketplace and your efforts to establish a glidepath to improve on the current 

practices, we are concerned that the new limits set out in the IFR are insufficient to ensure 

the continuation of coverage for families who are managing a child’s serious illness. In 

particular, we have heard from our partners who advocate on behalf of children with special 

health care needs that the first-year $750,000 limit is simply not enough to cover the care 

that is necessary for their children. Whether it is newborns being treated in the NICUsetting or children with severe long-term developmental, mental, and physical disabilities, the 

costs of providing care to this relatively small population are exorbitant. We urge the 

Administration to revise the regulation on annual limits to accommodate the needs of this 

population. 

We also request that the Administration extend the IFR to address not only dollar-amount 

coverage limits, but also efforts by insurers to cap the number of services a patient is able to 

receive. This is especially important for children who may require additional services over a 

compressed time frame to treat developmental health issues. 

Finally, we urge the Administration to ensure that parents and families receive timely 

notification regarding lifetime and annual limit requirements, including notification when 

they are approaching their limits. As important, we also urge you to ensure that families who 

lose coverage as a result of these limits are informed that they may be eligible for coverage 

under Medicaid, often the provider of last resort, and to provide information about how to 

apply for coverage. 
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Provider Choice: First Focus applauds the IFR for guaranteeing that parents are able to 

elect a pediatrician as the primary care provider for their children. While this practice is

becoming more and more commonplace, the clarification in the IFR will may make it easier 

for some parents to get the care that is most appropriate for their children. To strengthen 

the reach of this provision, we urge the Administration also to require health plans to 

maintain a current list of the providers that are included in their networks, including each 

provider’s specialty area. This would be a significant improvement for consumers who often 

must make numerous calls to hunt down so-called “participating providers” and to glean 

those which are in the specialty areas they need for themselves or for their children.

Recent Administration Guidance on Open Enrollment Periods and the Availability of 

Child-Only Coverage: We also wanted to take this opportunity to comment on the 

guidance issued by the Administration on July 27, 2010, which clarifies that insurance 

companies have the authority to establish open enrollment periods for children with preexisting conditions who seek coverage through child-only plans.

As stated previously, First Focus recognizes that in order for reform to be successful the 

insurance marketplace must be healthy and strong. While we support efforts to prevent 

adverse selection on the parts of both insurers and the insured, we urge the Administration 

to set in place safeguards to prevent the insurance industry from continuing to game the 

system to deny coverage for children with pre-existing conditions. Along these lines, we 

urge the Administration to issue further guidance to protect coverage for children with preexisting conditions during the September 23, 2010-January 1, 2014 interval, including the 

following:

Guidelines to ensure an appropriate duration for open enrollment periods;

A comprehensive list of qualifying events for which children would be eligible to 

enroll in coverage outside of the open enrollment;

A clear definition of the illnesses and conditions that qualify as a “pre-existing 

condition”;

Clarification that if a family with a child that has a pre-existing condition has a 

qualifying event which forces a change in coverage they will not have to wait for the 

open enrollment period before the child can be enrolled.

We recognize that addressing these issues before the reformed health care system is up and 

running in 2014 presents some challenges. To the extent that some of these children and 

families may have no choice but to enroll in coverage through the newly-established state 

high-risk pools, we urge the Administration to ensure that child-only coverage is available in 

each state, and that children who lose coverage as a result of a pre-existing condition should 

not be subject to any waiting periods to enroll in a high-risk pool.

We are grateful for the opportunity to comment on this important policy for our children. 

Continued action and vigilance must be taken in order to ensure that children reap the 

benefits and promise of health reform, including protections from current private insurance 

market practices designed to limit coverage for sick children. 
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We applaud the Administration for all of its efforts to improve access to care for everyone in 

America and for leading the charge on many of these reforms by beginning with our 

children. We would be happy to provide any additional information you may require. 

Sincerely, 

Bruce Lesley

President