August 27, 2010 

Office of Health Plan Standards and Compliance Assistance 

Employee Benefits Security Administration 

Room N- 5653, US Department of Labor 

200 Constitution Avenue, NW 

Washington, DC 20210 

Attn: RIN 1210-AB43 

Office of Consumer Information & Insurance Oversight 

Department of Health & Human Services 

Attn: OCIIO-9994-IFC 

PO Box 8016 

Baltimore, MD21244-1850 

CC:PA:LPD:PR (REG—120399-10) 

Room 5205, Internal Revenue Service 

PO Box 7604, Ben Franklin Station 

Washington, DC 20044 

RE: 26 CRF 54.9815-2704T, 29 CFR 2590.715-2704, 45 CFR 147.108, 26 CFR 

54.9815-1251T, 29 CFR 2590.715-1251, 45 CFR 147.140, 26 CFR 54.9815.2712T, 29 

CFR 2590.715-2712, 45 CFR 147.128. 

Interim Final Rules for Preexisting Condition Exclusions, Lifetime and 

Annual Limits, Rescissions and Patient Protections 

Dear Sir or Madam: 

The National Multiple Sclerosis Society (NMSS, the Society) welcomes this 

opportunity to provide comments on this Notice of Proposed Rulemaking regarding 

provisions of the Patient Protection and Affordable Care Act (ACA, the Affordable 

Care Act). Overall, we are very supportive of the proposed rules as contemplated, 

and offer the following comments to highlight only those issues of greatest relevance 

and concern to the approximate 400,000 people in the United States living with a 

diagnosis of multiple sclerosis. 

MS is an often disabling, autoimmune disease affecting the central nervous system. 

Although there is no cure for MS, access to appropriate medical treatment can slow 

the disease progression, reduce the frequency and intensity of flare-ups, and allow 

people with MS to live active and productive lives. Symptoms may be mild, such as 

numbness in the limbs, or severe, such as paralysis or loss of vision. Other 

symptoms include fatigue, dizziness, pain, decreased cognitive function and 

spasticity. 
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The mission of the NMSS is to mobilize people and resources to drive research for a 

cure and to address the challenges of everyone affected by MS. Affordable, 

accessible health coverage is an extremely important component of necessary 

supports for individuals affected by MS, including people with the disease and their 

family members. Our nationwide network of activists strongly supported meaningful 

health insurance market reforms in the ACA, and looks forward to new consumer 

protections making coverage and benefits more valuable and easier to utilize. 

Prohibition of Preexisting Condition Exclusions (2590.715-2704) 

The National MS Society strongly supports interim rules that prohibit both the 

exclusion of children under age 19 from the insurance marketplace due to their 

health status or history, and the imposition of pre-existing condition exclusions in 

their health plans. We were relieved when the Secretary acted swiftly to clarify that 

the law’s prohibition against pre-existing conditions for children was intended to 

stop both of these discriminatory insurer practices. These formerly legal forms of 

discrimination have become increasingly catastrophic for many families in the MS 

community in recent years, as the prevalence of MS in children as young as age three 

have been identified. It is now estimated that an approximate 10,000 children in the 

US under the age of 18 have MS and another 10,000 to 15,000 experience disorders 

that may be related to MS. 

We believe that expanding and strengthening the HIPAA rules relating to preexisting 

condition exclusions is an essential first step in ending this kind of discrimination. 

Because the HIPAA definition of ‘pre-existing condition’ and its application to 

health plans remains in effect, it is especially important for consumers (and parents 

in particular) to understand these definitions and rules. 

We are very concerned about the real possibility of plans charging unreasonable 

premiums for children with pre-existing conditions. Absent meaningful protections 

against rating based on health status, families with children with pre-existing 

conditions could continue to experience profound barriers to coverage and care. The 

Secretary’s anticipated definition of ‘unreasonable’ premiums and new procedures 

for reviewing insurers’ rates should include documentation about rate increases that 

are applied to policies that cover children. Regulations should require reporting on 

the number of children under age 19 that were added to the subscriber’s coverage, as 

a result of the new law. 

Lifetime and Annual Limits (2590.713-2711) 

The National MS Society applauds the interim finals rules that prohibit health plans 

from imposing lifetime limits on benefits. The annual health care costs per case of 

MS are currently approaching $40,000, and the total number and rate at which 

insured persons with MS are outliving their health insurance is accelerating. This 

long overdue protection against the devastating loss of coverage cannot come too 

soon for families coping with MS. 
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Enrollment After Lifetime Caps 

Clarification in the final rules is recommended regarding which former plan enrollees 

are eligible to re-enroll under the prohibition on lifetime limits, particularly in the 

individual market. Additionally, the final rules should address premium rate-setting 

for those that have 

previously reached a lifetime limit, specifying that no new underwriting or claims 

history may be used when determining a premium for coverage for such individuals. 

To assure consumers are made aware of this protection, the notice about new 

enrollment opportunities for those that have already reached their lifetime limit 

should be provided in plain language, with clarification regarding the beginning and 

end of the 30 day special enrollment period. 

Good Faith Efforts re: Annual Limits 

We are similarly concerned about new protections against annual dollar limits on 

essential benefits and strongly recommend the regulations be strengthened. Even 

before the essential benefits are defined, it is critically important that “good faith 

efforts” to provide anticipated essential benefits be clearly articulated and enforced. 

While the interim final rules advise health plans to use “good faith efforts” to 

determine the meaning of “essential benefits,” the ambiguity may lead to significant 

variations in the set of benefits subject to the rule. The rules should provide an 

objective definition of “good faith efforts.” Loss of grandfathered status alone is not 

sufficient to discourage plans from decreasing their existing benefit packages to 

adjust for bans in lifetime and annual limits. 

The regulations should be consistent with evidence-based guidelines developed by 

experts such as voluntary health organizations, professional medical societies, and 

consumer advocates. Furthermore, the standard for coverage should not be limited 

to a strict adherence to guidelines based on published evidence, which have in the 

past resulted in denials for coverage of high quality care. Where evidence is lacking, 

as is often the case in many areas of complex, chronic conditions, the consensus 

recommendations of clinical experts should suffice as a standard for coverage. 

We are concerned that non-monetary limits on benefits may still be allowable, such 

as numeric limits on items or services which could effectively result in the same caps 

on coverage and access limits on medically necessary care as dollar limits. This is 

especially true among self-insured plans that are not subject to the same market 

conduct reviews as fully-insured plans. Instead of allowing arbitrary caps, the rules 

should clarify that medical necessity is the criteria upon which insurers must base 

their claim determinations. 

Waiver of Annual Limit Restrictions for Certain Health Plans 

The rules provide that the Secretary of Health and Human Services may grant a 

waiver from annual limit restrictions to plans for which the application of the 
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requirements “would result in a significant decrease in access to benefits or a 

significant increase in premiums.” The rules state that future guidance will be 

provided on the scope and process of such a waiver. Such future guidance should 

clarify what is meant by “a significant decrease in access to benefits” and should also 

include specific criteria for what qualifies as a “significant increase in premiums.” 

Guidance should further provide for public notice and comment on proposed 

waivers and the posting of granted waivers on the internet. 

The preamble to the rules discusses mini-med plans as being possibly subject to 

future waivers. While we understand the need to protect people who have already 

enrolled in these policies until they have access to another affordable plan in 2014, 

we are concerned that many consumers enroll in these plans without understanding 

how unprotected they are against major medical expenses. Consumers in these plans 

have found themselves without access to care and/or in debt when they experience 

illness. The Secretary should consider whether consumers are likely to get anything 

of value for their premium for a mini-med policy before granting a waiver. If waivers 

allow new enrollments in these plans at all prior to 2014, the Secretary should require 

prominent warnings to consumers and employers, including information on what 

essential benefits are not covered or are limited and information about how to find 

more comprehensive coverage 

Applicability of Annual and Lifetime Limits to Student Health Plans 

Although rules regarding student health plans have yet to be issued, we share the 

concerns expressed by other advocates about the need for equally strong and clear 

consumer protections for insurance coverage of this vulnerable group. The Patient’s 

Bill of Rights should expressly apply to student health plans. Further, when 

evaluating waivers from annual caps for those plans, the Secretary should carefully 

consider the consequences of withholding this basic protection from students on 

plans with minimal benefits. 

Prohibition on Rescissions (2590.715-2712) 

The National MS Society supports the interim final rules that prohibit health plans 

from rescinding coverage except for fraud or intentional misrepresentation. MS can 

be difficult to diagnose, and it is not unusual for individuals to be diagnosed with 

one or more other conditions incorrectly before a proper diagnosis is made. 

Similarly, the signs of symptoms of MS often mimic those of other conditions, and 

some have been diagnosed with MS only to be relieved later on to learn they had less 

severe, and even entirely curable conditions. 

In the past, people who have experienced MS- like symptoms but do not have a 

diagnosis of definite MS have omitted information from medical questionnaires and 

insurance applications with no malicious intent, and others have avoided care and 

coverage for fear of the consequences of such disclosures. For these reasons, our 

community is particularly sensitive to allegations of ‘fraud’ or ‘misrepresentation’, 

and strongly supports clear and enforceable regulations and definitions in support of 

this provision. 
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While we support the interim final rules, we believe that the rules could be 

strengthened in the following ways: 

• The interim final rules only allow for rescission under certain circumstances 

(i.e. fraud or intentional misrepresentation); however, the rules should allow 

for any rescission to be reviewed by an independent third-party. In addition, 

health plans should be required to continue coverage during the review and 

appeal process, even if the 30 day notice period has expired. 

• The interim final rules should provide greater guidance on the notice and 

appeals procedure. For example, any notice should be required to be in 

writing and contain all relevant information to the investigations (i.e. when 

the investigation began, the disputed information, and the plan holder’s right 

to appeal). Additionally, plan holders should have the opportunity to offer 

relevant evidence to the insurer within a reasonable time frame. 

• The rules should allow a health plan to investigate a potential omission or 

misrepresentation only if it can prove to the state that it has reasonable 

grounds to suspect that the enrollee intentionally omitted or misrepresented 

information during the application process. 

• The Secretary should establish standardized information and health history 

questions to be used on health plan application forms. Standardized 

information will provide greater uniformity for what is often long and 

confusing paperwork. 

• The term “material fact” needs clarification and should be narrowly defined. 

Consumers otherwise may not be clear what information is material to the 

issuance of a health insurance policy 

• The regulation should explicitly note that insurers bear the burden of proving 

that a consumer has committed fraud or intentional misrepresentation of a 

material fact. Consumers should be informed that the insurer bears the 

burden of proof in the 30-day advance notice of rescission that plans must 

provide. 

Patient Protections (2590.715-2719A) 

The National MS Society also strongly supports the interim final rules’ patient 

protections allowing consumers greater choice when selecting in-network care 

providers and pediatricians. We would urge the final rules be strengthened through 

the following: 

• The Secretary should use her discretion to include provisions that would 

allow patients with disabilities and chronic conditions to have better access to 

specialty care without prior authorization from a primary care “gatekeeper.” 
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Allowing greater access could improve efficiency, decrease costs to the plan 

and lead to more timely care. 

• The emergency care provisions should be expanded to specifically include innetwork services. While the interim final rules provide protections against 

administrative hurdles and undue cost-sharing for out-of-network emergency 

services, the rules do not specifically apply the same protections to innetwork services. 

The National MS Society truly believes that these interim final rules are an important 

first step for people living with chronic conditions and disabilities, including people 

living with MS. However, we also believe that the rules, in their current state, could 

be strengthened to provide even greater protections. We appreciate the opportunity 

to provide comments on such pressing issues. 

Thank you for your consideration. 

Shawn O’Neail 

Vice President, Federal Government Relations