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I've been seeing many stories about the billions in losses that the closing of the medicare subsidy will cost companies such as AT&T, Verizon, Caterpillar and others. What they fail to tell you is this subsidy was a tax loophole that was instituted by the Bush medicare part D prescription drug plan that was instituted in 2003.

From my understanding (which might be wrong), the loophole allowed employers who covered retirees a tax deduction on a subsidy that was already tax free. Employers were granted a subsidy of 28%, or up to $1,330, per retiree for prescription drug costs, but they were then allowed to deduct the costs of the drugs from their income that were being paid for by the federal government, effectively giving them a deduction on an expense the taxpayers, not the companies, were incurring.

What this points out is twofold: 1. The companies have only received this benefit for 7 years due to a badly written bill in 2003 (although this loophole won't be closed until 2013). 2. The companies will still be able to deduct any costs they actually pay with their own money from their income.

It's really interesting to see Conservatives get so upset about a company losing a tax deduction on an expense the taxpayers are actually already paying.

I was lucky enough to get a one-on-one talk with a staff member of the Michael J. Fox Foundation (MJFF) this week, and she was lucky enough to stay for dinner and have some of the wife's Gazpacho.

The following are notes from memory that I wrote up after she left. They are in no particular order, just a stream of consciousness.

They have done a genetics/environment combination study. Evidently they did a study which found 11 markers when found in some combinations, increase the risk of PD if you are also exposed to some life factor (ie pesticide, brain injury, etc). Pure genetic PD is still considered rare, but a focus area of research, because treatments that arise out of genetics can be used for everyone. The genetics give clues to how the genes effect all PD patients.

They are focusing research on cures AND stopping/reversing progression. One other focus is developing a clinical test that determines not only if you have PD but your progression so clinical trials can have measurable results. Unlike the UPDRS, this would be an objective measure via blood work, brain scan, etc.

Stem cells are seen as longer term because they are more likely to cause harm so treatment has to be perfect. Big areas are genetics and protein based treatments. Big issue is delivery method to get past blood-brain barrier. One study is looking at DBS-like treatment using drugs instead of surgery. Another looks at using alternative receptors/transmitters to help control motor function as Dopamine production drops.

We also talked about how the science is funded and how they are changing it. Scientists receive grants for new ideas while pharma needs to make a profit, so they're trying to fill the gap between good new ideas that have no development behind them to show there is a profit in the future.

Hope the notes help and give to the MJFF.

Our daughter has been on a feeding tube since she was two days old and has had a mic-key button since she was about 6 weeks old. I went to a workshop for parents of kids with feeding tubes at Rady Children's Hospital in San Diego with Marsha Dunn Klein of Mealtime Notions around early 2007.

I added my notes as an info page. Some of the key points we took away:

• Tube feeding should be social, like a meal time
• Should be celebrating experience with food (touch, smell, etc, not just eating)
• It’s not about how much at first

Hope the notes can help someone and if you have notes from a workshop or seminar that you attended that may help someone else, please feel free to add them using the Create an Info Page link.

I just had a quick discussion with my wife and it reminded me why even the insured, especially those with kids with special needs, need health care reform. What most people don't realize is that they are one issue away from being grossly underinsured and needing drastic help with healthcare costs. Here are a few examples we've heard over the past few years.

• Child has developmental delays and requires weekly Physical Therapy, Occupational Therapy and Speech Therapy that show results. Therapy co-pays are $40 per session, so that is $120 per week or $5000-$6000 more annually, not including any doctors visits.
• Child has a tracheostomy, but insurance company only covers 30 suction catheters a month or one a day. As an example of how grossly under covered this is, when our daughter has a cold, she might go through 15-20 in a day. This child's parents have to clean this sterile, disposable medical equipment multiple times a day.
• Child has feeding issues and does not eat anything solid and only drinks a special formula that costs more than $20 a day. However, insurer does not cover the cost of the formula because the child is growing and not failing to thrive.

These are just a few examples of how insurance does not mean your covered. Please add your own examples in the comments.

The Genetic Information Non-Discrimination Act (GINA) prohibits the improper use of genetic information in health insurance and employment.

Why do I have such a hard time believing people's motives are so good and in the best interests of the insured in this story via a tweet from 23andMe.

A healthcare industry group (The Care Continuum Alliance or DMAA)

and employer groups are urging for a moratorium on GINA fearing that the law's restrictions on "underwriting" activities will harm enrollment in wellness programs,

From Tweet Cloud:

The Apple iPhone is now becoming a medical device as developers find new and innovative uses for it. Medical professional's already have a variety of apps to help them in their jobs. However, new apps are now being created for a variety of people with medical needs.

These apps range from simple tracking applications like the Crohn's Toolkit which helps patients manage their disease better and give better data to their doctors to the soundAMP app that turns your iPhone into a digital hearing aid with record and playback capability.

Here is a list of apps I've found so far.

1. soundAMP - Turns iPhone or iPod Touch into an interactive hearing device
2. Crohn's Toolkit - Helps Crohn's and Colitis patients manage their condition better and
   communicate with their doctors.
3. iPrompt - One of a number of communication apps for use with children with developmental and language delays
4. Behavioral Tracker Pro - Supports tracking behavior and graphing it, including ABC therapy
5. Step Stones - Visual activity schedule for those with special needs or learning disabilities

UPDATE: I have created a wiki info page that anyone can update.

A new Quinnipiac University Poll says that 69% of Americans want a government-run health insurance option, while only 28% of the respondents would use it. What is really telling is:

Only 15 percent of voters would be willing to pay $500 to $1,000 more in taxes each year for a health care plan that reduces costs and covers those who don't have health insurance. Another 27 percent would pay less than $500 per year, with 3 percent who would pay $1,000 to $3,000 and 45 percent who don't want to pay additional taxes.

This is interesting for two reasons:

1. The average family with health insurance already pays an extra $1,000 a year in premiums to pay for health care for the uninsured, while the average individual pays an extra $370 according to a report by Families USA.
2. A government-run health insurance option will have "significant price advantages" over private health insurers according to Republican Senator Olympia Snowe and Conservative columnist George Will.

So, in effect a public option would probably reduce costs by insuring the uninsured and forcing private health insurance companies to become more cost competitive. Yet, pollsters are asking questions about paying more in taxes for a public option without debating the fact that costs would likely significantly decrease.

But what about government bureaucrats running health care and getting between you and your doctor? That is already occurring, the bureaucrats are just working at for-profit insurance companies who have already testified before Congress that they would not commit to limiting rescissions to only policyholders who intentionally lie or commit fraud to obtain coverage. A policy where:

an investigation by the House Subcommittee on Oversight and Investigations showed that health insurers WellPoint Inc., UnitedHealth Group and Assurant Inc. canceled the coverage of more than 20,000 people, allowing the companies to avoid paying more than $300 million in medical claims over a five-year period.

It also found that policyholders with breast cancer, lymphoma and more than 1,000 other conditions were targeted for rescission and that employees were praised in performance reviews for terminating the policies of customers with expensive illnesses.

Do you really want to trust the private health insurance companies more? They are the ones who

have forced consumers to pay billions of dollars in medical bills that the insurers themselves should have paid, according to a report released yesterday by the staff of the Senate Commerce Committee.

My sister-in-law sent me this link to a sign language video dictionary. While I haven't yet registered, it already looks like a great resource for learning more signs.