Sunday, May 30, 2010

Comments on Proposed Health Care Web Portal for Consumers

Comments filed by Advocacy for Patients and Lybba regarding the creation of a web portal that will help consumers find and choose health insurance:

Department of Health and Human Services
Centers for Medicare & Medicaid Services
Department of Health and Human Services
P.O. Box 8014
Baltimore, MD 21244-8014

RE: Health Care Reform Insurance Web Portal Requirements

Dear Sir/Madam:

Thank you for this opportunity to comment on draft regulations governing the establishment of an internet website (hereinafter Web portal) through which individuals and small businesses can obtain information about the insurance coverage options that are available to them in their State.

Advocacy for Patients with Chronic Illness is a 510(c)(3) tax exempt organization that provides free information, advice and advocacy services to patients with chronic illnesses nationwide. We serve approximately 1500 patients per year nationwide, and reach many more through publications and public speaking. At least half of our clients contact us with health insurance-related matters, i.e., they do not have coverage and have a preexisting condition that precludes them from getting coverage, or they have insurance but their insurer has denied coverage of a treatment that their physician believes is medically necessary and appropriate. We are called upon to advise patients and caregivers about health insurance alternatives all around the United States on a daily basis.

Lybba is a 501(c)(3) tax exempt internet-based platform whose work intersects across three areas: translational research – speeding the adoption of laboratory and clinical insights through more effective collaboration, data exploration, and pattern analysis; patient empowerment – improving people’s ability to choose the best care for themselves through access to the most helpful people and information; and clinical improvement – improving quality of care and reducing costs through better understanding of one’s own practice and how it compares with other practices.

It is from these perspectives that we offer the following comments.

The Patient Protection and Affordable Care Act (PPACA), Pub. L. 111-148, section 1103(a) as amended by section 10102(b), requires the establishment of a Web portal through which individuals can obtain information about the health insurance options that are available to them in their State. At a minimum, the Web portal is to provide information on: (1) health insurance options offered by health insurance issuers; (2) Medicaid coverage; (3) CHIP coverage; (4) State high risk pools; (5) high risk pools created pursuant to section 1101 of the PPACA; and (6) small group plans offered to small employers. The Congressional purpose will be well-served by a Web portal that provides a sufficient amount of information about each of these types of plans so as to allow consumers to make informed, intelligent choices.

1. Health insurance options offered by health insurance issuers

We understand that a truly thorough version of the Web portal cannot be made available until October 1, 2010. We also understand that the October version will include benefit and pricing information, critical to permitting consumers to evaluate their options. You state that insurance issuers will be required to submit information “on at least all portal plans that are open for enrollment and that represent 1 percent or more of the issuer’s total enrollment for the respective individual or small group market within that zip code.” Thus, it is and should be clear that each issuer will have to provide information on every plan offered in a zip code, and not just one of their plans, even if that one plan is their largest plan or the plan in which they prefer to add enrollees.

The benefits that must be disclosed should be detailed in the regulations. First, if medical underwriting is allowed, and the regulations allow issuers to provide information relative to standard risks, issuers should be required to note that medical underwriting will be undertaken so that consumers are not misled by standard rates. In addition, issuers should be required to state expressly whether coverage will be extended to consumers with pre-existing conditions. The phrase “pre-existing condition” should be defined clearly, so that if an insurer will exclude persons who had symptoms that would cause a reasonably prudent person to seek medical attention even though the person had not yet sought such attention or obtained a diagnosis, consumers will be aware of the way in which their preexisting medical conditions will be treated for purposes of both eligibility and rating.

In addition, insurance issuers should be required to state expressly whether the plan will cover out-of-network providers, and the extent of such coverage, if any. If there is a different deductible, copay or coinsurance, and out-of-pocket maximum for out-of-network providers, all of that information should be provided with specificity.

Also with respect to the statement of benefits, issuers should be required to provide some means by which consumers can determine whether prescription drugs that they take on a regular basis will be covered under a particular plan’s preferred drug list or formulary. This can be accomplished by a link to the plan’s formulary, the publication of the formulary itself, a search mechanism for names of prescription drugs that would search an issuer’s formulary, or any other means that permits a consumer to determine, before purchasing insurance, and in the process of comparing insurance options, whether the prescription drugs they take regularly are covered under the plan.

Indeed, we would take this a step further. In our experience, consumers often are misled by formulary listings because they do not state the use for which the prescription drug is approved. For example, a formulary might include the drug Stelara; however, the plan might only cover Stelara for psoriasis, and not for Crohn’s disease. A formulary might include the drug Marinol; however, the plan might only cover Marinol for nausea and vomiting secondary to chemotherapy but not nausea and vomiting secondary to gastroparesis. These two examples are not hypothetical; they are two examples that arose on the very day on which we are writing these comments. A formulary that does not explain limitations on the use of a prescription drug is not useful to consumers.

Next, we query why the regulations seek voluntary data submission by States rather than mandatory data submission regarding insurance issuers. The submission of data by States would provide a means to ensure the accuracy of the data submitted by insurance issuers. We would suggest that the States be required to either provide the data in their possession, or verify the data being provided by insurance issuers.

Finally, we strongly support the inclusion of “interactive functionality that accounts for geographic and personal demographic information such as State and zip code of residence, sex, family composition, smoking status, and other health indicators” to the extent that the insurance issuers would take such health indicators into consideration in underwriting and rating a plan. We suggest that those plans that are tailored to the more specific information provided by the consumer be listed first, allowing consumers to see the universe of options available. Consumers could then choose a second round of edits based on range of premium, deductibles, out-of-pocket maximums, and so on.

2. High risk pools

First, it will be critical for consumers to be able to find out as soon as possible what plan is operating under section 1101 of the PPACA, i.e., whether this will be the State’s high risk pool or a federal plan. This information must be available by July 1, 2010; currently, consumers are left unaware of where to even look to find their section 1101 high risk pool.

Second, all high risk pools should be required to explain clearly their eligibility criteria. If either type of high risk pool has a waiting period during which a person must have been uninsured, that should be clear, as should any exceptions to that rule. Similarly, if there is a pre-existing condition exclusion or waiting period, that information should be readily available.

Third, many traditional high risk pools have different eligibility rules for people who are so-called HIPAA eligible, i.e., they have had insurance for 18 continuous months, the last day of which was in an employer-based group plan, they have exhausted any COBRA eligibility, and they have not had a break in coverage of more than 63 days. If a high risk pool has different eligibility rules for different groups of people, that information should be provided on the Web portal.

3. Medicaid and CHIP

Currently, it is difficult to find basic eligibility criteria for each individual State’s programs and we, as consumer advocates, have no consolidated, comprehensive source of this information. It often is difficult to counsel consumers around the country regarding Medicaid and CHIP eligibility. The inclusion of this information on the Web portal will be an invaluable tool for consumers.

In particular, it will be extremely helpful for consumers to have ready access to information regarding whether childless adults are covered under Medicaid, for example. In addition, although most States that do not provide coverage for childless adults currently state that they do provide Medicaid eligibility for adults who are disabled, most of them do not explain that the only “disability” that suffices is a finding of disability by the Social Security Administration. Thus, there are many adults who apply for Medicaid and challenge denials of eligibility because they believe they are disabled, even though their application for Supplemental Security Income is pending with the Social Security Administration. The Web portal should state expressly the requirement of a finding of disability by the Social Security Administration to avoid unnecessary applications and appeals as consumers believe they qualify for Medicaid when, in fact, they clearly do not.

4. Miscellaneous

Finally, we urge you to at least request, if not require, that a link to the Web portal be posted on websites of the State Insurance Department, the State Medicaid and CHIP agency, and State high risk pool websites. In addition, it would be helpful if the National Association of Health Underwriters and the National Association of Insurance Commissioners posted a link to the Web portal, as well.

5. Conclusion

The Web portal will be an essential tool for consumers who have to navigate the maze of insurance options and make informed decisions. We hope that our experience working with consumers has enabled us to provide you with some useful ideas about how to make the Web portal even more useful.

Thank you for this opportunity to comment on this important provision of PPACA.


Jennifer C. Jaff, Esq.
Executive Director
Advocacy for Patients with Chronic Illness
18 Timberline Drive
Farmington, CT 06032
(860) 674-1370

Jesse Dylan
8330 West 3rd Street
Los Angeles, CA 90048
(323) 653-2300


  1. What a well stated articulation of the necessary components to make the prospective Health Care Portal relevant and valid. Thanks for this. I am sharing with my health care pals on Twitter.

  2. I really appreciate your post and you explain each and every point very well.Thanks for sharing this information.And I’ll love to read your next post too.


  3. Wow, what a great site, all of the posts are so informative for people with disabilities. I liked it! I also have a blog/site about that covers wheelchair related stuff. Please feel free to visit. Thanks for sharing.
    ARAI Approved Side Wheel Attachment
    Side Wheel Attachment For Handicapped
    Keep Posting:)

  4. Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
    Electric Scooter India

    Keep Posting:)