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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.

This article, Dos and Don’ts of Air Travel: Toddler Edition, from Wired got me thinking how different air travel is with our daughter than it was when we just had our son who had no medical equipment. So I figured I'd make an addendum to the article for parents traveling with kids who have special needs especially medical equipment. The Wired list was:

1. Don’t overpack
2. Don’t forget to check your stroller at the gate
3. Don’t freak out
4. Don’t worry about other people
5. Do pay attention
6. Do pack a few good gadgets and toys
7. Do bring an unseen “surprise” for good behavior
8. Do utilize the lavatory
9. Do prepare them

The advice is pretty good, but I'll have to disagree with number 1 when it comes to medical equipment. This is the stuff your child needs and there is no place for a plane to stop and get spares. We found this out on a plane ride from California to Texas and my daughter's suction pump broke. So there we were at 30,000 feet with no suction pump in case our daughter's trach was clogged. Luckily, we had a manual suction alternative that we could use and I was able to jury rig another alternative until we got a spare part, but it would have been easier to just have the spare on hand. Thus, here is my additions to the list.

• Make a list - This list should include every piece of medical equipment your child needs. Additionally, any items that are ever changed, list at least one more than is needed for the time you are traveling. Thus, if you use one kangaroo bag for your child's feeding tube per day and are traveling for seven days, list at least eight bags.
• Contact your medical equipment company - Ask if they have a travel department or facility at your destination. This is especially helpful when traveling to family. If your child would never need a particular piece of medical equipment except after you arrive, see if your equipment company can deliver a spare to you at your destination so you do not have to travel with it.
• Get a name and number at the medical equipment facility near your destination and bring it with you - This is in addition to the above so if anything does break, you are not panicking about who to call.
• Have a copy of all prescriptions - You want the prescriptions just in case there are any questions at security as well as if you need an emergency refill. While, you cannot use the copy to get the refill, it contains all the information a pharmacy needs to fill it, after contacting your pharmacy at home.
• Ship ahead - Take your list and box everything that is a spare except for what you need for the flight, one overnight stay in case you are delayed and the extra days worth of items that you included on the list. Try to ship about one month ahead of time so it costs less and you are sure it arrives. This is dependent on having someone that will receive it. So, if you are not traveling to friends or family you may need to check if your hotel would hold it for you.
• Pack electronic medical equipment together and make it easy to repack - You'll probably want to carry on all the medical equipment so it will not get lost. Security will make you take all the electronic equipment out and run it through like a laptop, so be prepared.
• Call the airline a week ahead of your first flight - The reservations folks can note any special equipment you are using (especially oxygen) or can tell you who you need to contact or what special things you need to do. I do not know about allergies (e.g. peanuts), but it probably would not hurt to call.
• Get to the airport early - You are going to take longer at check-in so you can once again inform them of your medical equipment and get pre-boarding passes. Also, security will probably take longer as well. So don't make their jobs harder by forcing them to rush so you can catch your flight.
• Relax and smile - The airline and security people probably don't encounter a child with your child's needs everyday. Therefore, if you are relaxed and smiling, they will most likely do the same and things should go smoother. This does not mean be a pushover and let them open sterile medical equipment, just try and make their jobs a little easier and they will probably be more helpful towards you.

If you have any more tips or advice add them below in the comments.