Jesse Dylan, founder of Lybba, and Jennifer Jaff, Executive Director of Advocates for Patients with Chronic Illness, recently provided constructive comments to the Federal government on regulations to be rolled  that bear on provisions in the health care bill, specifically as they relate to pre-existing conditions, life-time and annual caps, and patient protections.

The following is the text of that letter.

~The Editors

Dear Sir/Madam:

Thank you for this opportunity to comment on interim final rules implementing sections of the Patient Protection and Affordable Care Act sections 2704 relating to preexisting condition exclusions; 2711 relating to lifetime and annual limits on benefits; 2712 relating to rescissions; and 2719A relating to patient protections.

Advocacy for Patients with Chronic Illness, Inc. is a 501(c)(3) tax exempt organization that provides free information, advice, and advocacy services to patients with chronic illnesses nationwide. Of particular relevance here, we assist people with chronic illnesses to find health insurance that covers their pre-existing conditions, appeal insurance company denials of coverage, including denials of coverage for out-of-network emergency services, reverse rescissions, and strategize around lifetime and annual limits on benefits. Based on our experience working with thousands of patients nationwide, we are uniquely qualified to comment on the interim final rules.

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.

As a whole, we are heartened by the interim final rules. 29 C.F.R. § 2590.701-2704. The regulatory implementation of the statutory elimination of pre-existing condition exclusions beginning in 2014, and beginning at the start of the next plan or policy year after September 23, 2010 for individuals under age 19, is a milestone for the consumers we serve, all of whom by definition have pre-existing conditions. We cannot overstate the importance of this change in the law.

Similarly, the regulatory implementation of the statutory elimination of lifetime and annual limits on benefits in 29 C.F.R. § 2590.715.2711 will have tremendous significance for patients with chronic illnesses, many of whom have had to change jobs repeatedly due solely to a limitation on benefits. In particular, we applaud the implementation of the U.S. Department of Labor phase-out of annual limits between now and 2014, when such limits will be banned entirely. As discussed in great depth in the preamble to the rules, the minimum annual limits for plan or policy years beginning on September 23, 2010, September 23, 2011, and September 23, 2012 are sufficient to protect patients without unduly burdening plans and issuers of insurance.

We do wish to offer one suggestion, however. The section of the rules that pertains to cost-sharing requirements for out-of-network emergency services provides that plans and issuers must pay out-of-network providers an amount equal to the greater of the median in-network reimbursement rate, the reasonable and customary reimbursement rate, or the Medicare rate for such services. 29 C.F.R. §§ 2590.715-2719A(b)(3)(i)(A), (B) and (C). As a general rule, consumers do not have access to information regarding reimbursement rates. We repeatedly have attempted to challenge an insurer’s representation of the reasonable and customary rate for out-of-network services. Other than pointing to the particular out-of-network provider’s usual and customary rate, we have been unable to locate data that would assist us to demonstrate that the insurer’s representation of usual and customary rates is unreasonably low. This problem has been well documented. See, e.g., “A Rip Off by Health Insurers?” New York Times Editorial (February 18, 2008). We therefore recommend that the Departments consider ways in which consumers might be better informed regarding reimbursement rates so that they can enforce these rules.

At the very least, we believe that, in any explanation of benefits relating to out-of-network emergency services, the insurer should have to disclose (1) the median rate; (2) the usual and customary rate; and (3) the Medicare rate. In addition, upon request, a consumer should be provided with data supporting these rates, and the explanation of benefits should inform consumers that they have a right to request such data. If the rules regarding cost-sharing for out-of-network emergency services are to have teeth, the playing field between consumers and plans/issuers must be leveled. By requiring disclosure of ratesetting data, the cost-sharing requirements would be strengthened significantly without overly burdening insurers, who, under the rules, will have to have such data at hand, making disclosure nothing more than a ministerial act.

Again, notwithstanding this one suggestion, we wish to register our support for the approach taken in the interim rules. Thank you for allowing us to comment on these critical reforms. We are confident that they will greatly enhance the lives and the health of the thousands of patients we serve.

Sincerely,

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

http://www.advocacyforpatients.org

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

http://www.lybba.org

As you know, President Obama signed into law health insurance reform legislation in March 2010. The first big events are about to occur, so I wanted to give you a head’s up so you’ll have accurate information.

First, the federal web portal will go live on July 1st. It will be at www.healthcare.gov. (NOTE: The link won’t work until the site goes live on Thursday). When it’s fully populated, it will tell you what plans are available to you in your state, what they cost, what they cover — all the info you need to be able to compare and choose a plan. However, don’t expect it to be fully up and running on day one; October 1 is the target date for the portal to have all the information that you will need. But July 1 will be a starting point.

What should be available on July 1 is information about the new Pre-Existing Condition Insurance Plans (PECIP), or what traditionally are known as high risk pools. Under the new law, pre-existing condition exclusions are illegal for children up to age 19 starting at the beginning of the next plan or policy year after September 23, 2010. Thus, if your employer’s insurance plan works on a calendar year basis, so your plan year starts on January 1, the prohibition against pre-existing exclusions for children to age 19 is effective on January 1, 2011, the beginning of the plan year following September 23, 2010.

For adults, the rule banning pre-existing condition exclusions does not take effect until 2014. Until then, if you have been without insurance for at least 6 months, and if you can produce evidence that you were turned down for individual insurance due to a pre-existing condition, you will be eligible to enroll in a PECIP, which will cover your pre-existing condition from day one. About 30 states will run their own PECIP; the remaining 20 — most of which are suing to try to stop the new law from taking full effect — will allow the federal government to run their PECIP. Premiums will be based on the norm in your state, whereas existing high risk pools tend to be more expensive than the average individual insurance plan.

PECIPs are supposed to begin enrollment on July 1 and coverage on August 1. However, at least some of the states that are running their own PECIP will be delayed a bit; it is no small task to design a whole insurance plan in only three months. I can’t tell you what the PECIPs will cover, what (exactly) they will cost, or even what state agency to contact since some states are running them through existing high risk pools and others are organizing them differently. What I can tell you is that, if you can afford the average price of insurance — not cheap, but not astronomical — and you haven’t had insurance for 6 months, you will qualify . . . IF you get a letter from an insurance company denying you coverage due to a pre-existing condition. So step one is to apply NOW for ANY individual plan, disclose your pre-existing condition on the application, and get that letter turning you down. Once you have that, you will be ready to go when the plan in your state becomes available.

What we believe will be the case with the web portal, then, is that the federal PECIP will be up in some detail on July 1st, along with coverage information, pricing, and instructions on how to sign up in your state. State PECIPs are going to be added as soon as the state has provided the information to the federal government, so in some cases, that will happen on July 1, as well. In addition, the government will be adding information about EVERY SINGLE PLAN available to you in your state. By October 1, you should be able to plug in your zip code and come up with all of your options. This is a very exciting opportunity.

This won’t take the place of intelligent shopping. If you read our Comments on the web portal regulations, you know that HHS is still considering how much detail to put on the web portal. Consumer advocates like Advocacy for Patients, in partnership with Lybba, are urging HHS to provide as much information as possible. but the web portal — like most aspects of early health reform implementation — is a work in progress.

Still, even if all the i’s aren’t dotted and the t’s aren’t crossed, July 1st will be a big day for health reform. Keep checking back here; as always, we’ll provide you with information as it becomes available.

Jennifer Jaff is Executive Director of Advocacy for Patients with Chronic Illness, Inc.; this article appears simultaneously on their website.

Gossip Girl makes it look fun. True Blood makes it look dangerous. And it may be all of the above…but sex among teens is not to be taken lightly. Lybba’s own Kimberly Spector appears in a recent WebMD Health News article, sharing her thoughts regarding teens and sex.

The article reports that according to a 2006-2008 National Survey of Family Growth conducted by the CDC, 40% of teens between 15-19 years of age have had sex. Frighteningly, 18% of boys and 14% of girls claimed they would feel at least some happiness if their sexual encounter resulted in pregnancy…Uh oh!

Though contraceptive use has increased since 2002, the fact that 14% of sexually active girls and 18% of sexually active boys are not opposed to becoming parents is still scary. Kimberly Spector responds to these statistics, calling upon sex educators and parents to “start talking in more depth about the realities of parenting.” Brad and Angelina may have a private jet filled with nannies, but the average teen will be faced with, “dirty diapers, sleepless nights, increasing expenses, and often, emotional exhaustion.” Sounds like fun, doesn’t it kids!

Though parenting may be one of the greatest joys one can ever experience, as my mother told me: “You’ll never sleep the same.” Personally, I LOVE SLEEP, so have a frank discussion with your children about teen pregnancy.

That’s a wrap!

Check out the full article here

Jesse Dylan, Lybba Founder

What do Jesse Dylan, Lady Gaga, and Jamie Oliver have in common?

No, they aren’t all on the “baby food diet.” But they are on the 2010 list of “ The 100 Most Creative People” in Fast Company Magazine.

Check out the article about Jesse here.

Jesse and Lybba’s sister media company, FreeForm, recently completed a short film about the Large Hadron Colider, the massive particle accelerator designed to replicate the big bang and address core questions of physics. ”It is very difficult to make a picture or a poem of what we do.” says CERN experimental physicst named Maria Spiropulu, “The film captured an adventure to discover the unknown. It is haunting and it sticks with you.”

Jesse’s credentials as a director, his film and music videos, as well as his social activism have been impressive. But we just know him as the founder of our nonprofit, and the creative force behind our nascent healthcare platform.

Lybba is a labor of love and intelligence. Equally critical is the ingenuity born of the creative process. It’s amazing what people can do when they put their minds and hearts to the task.

Check out some of Jesse’s films here, and learn more about Lybba here.

Recently, I was lucky enough to attend TEDxUSC.  For those who aren’t familiar, TED events are basically, giant conferences that gather innovators in a variety of fields to share the cool new stuff they are doing.  It’s kind of like Sesame Street for adults…a fun way to learn.

Getting tickets to a TED event is a unique thing.  Interested persons fill out an application of sorts and submit it.  Attendees are selected for their interests and motives for attending.  The goal is to gather a diverse group of individuals who will actually appreciate, contribute to and help shape the TEDx experience.  That’s a nice thought isn’t it?  Consequently, I found everyone I spoke with to be interesting, intelligent and really very nice…refreshing.

I got to USC early…as in, I decided to geek out and immerse myself in the whole TEDxUSC “experience”.  I wanted to be in the very front (might as well go completely geek).  I lined up an hour early with other like-minded and excited geeky types.  I watched the line grow down the steps of USC’s Bovard auditorium, along the side of the building, around the corner and down the road.  The crowd was massive.  I was getting really excited.  The day seemed quite promising.

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Jesse Dylan’s online health care crusade
Marketwatch writer Jon Friedman dishes with Jesse Dylan and other Lybba leaders on where we’re taking our nonprofit.

Click here to read the article: http://bit.ly/ddT8gY

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How do you define medical innovation, what does it mean to you personally?

As a filmmaker I’ve recently focused my lens on the medical community.  Most of the chatter we hear about health is focused on the current healthcare debate.  But I’m more interested in the health and care of communities, not the debate in which the patient generally has no voice and is usually completely absent from the conversation.

How can focusing on the art and science of medical innovation bring about solutions to some of the most vexing healthcare challenges facing patients?  How can we more effectively focus on preventive care, as well as treatments, and standards that have direct impact for patients at the bedside?  These are the ideas and questions I’ve been grappling with.

As I’ve traveled the country interviewing patients, families, and experts from around the world, I’ve asked them to share their thoughts on these ideas.

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Lybba staff descended on Cincinnati Children’s Hospital Medical Center this month to kick off a major NIH-funded initiative that could have profound impact on how clinicians, patients, and researchers treat and manage chronic illness.

Drs. Peter Margolis and Michel Seid assembled an open-source science team comprising more than twenty researchers, doctors, patients, scientists, technologists, and designers for the two-day event.

The purpose of the team’s effort is to study the health outcomes of use of a clinical collaborative care network (C3N), with Lybba serving as the backbone.

“We’re on a team with some of the most brilliant health-care innovators in the country,”  said Jesse Dylan, Lybba’s founder. “This team is deeply experienced. But just as important, they care deeply about the viewpoints of patients and their families, who will guide our work every step of the way.”

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