PeopleWithMS.com Newsletter

July 2, 2004


NewsFlash 

Medicare MS Rx Lottery  


PeopleWithMS Welcomes . . . . . 

JeffS Following his success in administering, and later adjudicating the first PeopleWithMS Chat Wedding, and the popular acclaim of the Muff and Jeff Show, there was a groundswell of public demand for JeffS's appointment as our newest Room Administrator.  

GrannyBJ is preparing for her birthday on July 5.  Make sure you give her a "Happy Birthday" welcome if she comes in.  Congratulate the proud grandmother on her daughter Abby's new baby, Sophia Isabella, too.  And give a read to her motivational article for PeopleWithMS"Traveling on a Cruise Ship."

SteveNL, took off on vacation to Spain for a week, with family, starting Wednesday.  We're hoping photos on his return.

JustVisiting, dx'd in 2000, stopped in from Cleveland.  She was on Copaxone, then Rebif, but had adverse site reactions to the subcutaneous injections due to muscle atrophy.  Her neuro is urging her to try intramuscular Avonex, which she probably will.   Keep your eye open for her.

Judy has been scarce lately due to her husband's medical problems.    But she should be back in as soon as things calm down a bit.

Delbert has ripping towards the East Coast.  This week he's passing through western Ohio, Kentucky, and West Virginia.  Soon western Pennsylvania and New York!   WheelsofHope needs your support !  Track his progress across the 48 continental United States; http://www.wheelsofhope.net/  

Chats are most active every night starting around 7PM EST, and during the days around lunchtime EST.  However, feel free to drop by anytime, leave your window open for a bit, and somebody is sure to drop by.

Buddy Hosting Nights

A Special Thanks 

Coming Attractions:

Special Notes:

Daytime Hosted Chat Schedule

Tuesday 2-4 pm  Dreamcicle
Wednesday 11-1 EST Lesley Anne
Friday 12-2 pm Dreamcicle

PeopleWithMS.com needs chat hosts ! ! ! Donate a couple hours during the day or evening to host, on a regular basis, and we'll make you famous !  Or any other time you'd like !   If your focus is a particular topic or aspect of MS, just let us know and we'll post that in the Newsletter, too.  

You can informally host anytime you want.  No uniforms, caps, or badges.  Just be there for someone new when they pop in.  


New Stories and Pictures

Your name, story, and photo can be right here in the spotlight, in our weekly newsletter.  Just send it along to: PWMS@PeopleWithMS.com


New Experiences

GrannyBJ aka Betty Jo has graced us with an excellent article on her recent Alaska Cruise trip;  "Traveling on a Cruise Ship."  A great motivational piece illustrating how being wheelchair bound does create boundaries to travel. If she can do it, you can too !


New Link Sightings

As an adjunct to the Medicare Lottery News, we're reprinting this list of links on Patient Assistance Programs.   These programs, often from the drug companies, provide financial subsidies for the cost of medications.   So there's something to fall back on, just in case you or someone you know doesn't hit that big Medicare Jackpot.

Patient Assistance Programs

NeedyMeds MS Foundation PWMS ** 6/29/04
"This site is designed to provide information about patient assistance programs which provide no cost prescription medications to eligible participants"
Helping Patients.org PWMS ** 3/6/04
The Pharmaceutical Research and Manufacturers of America (PhRMA) sponsor this site.  There is a simple form to fill out to determine eligibility for financial aid in acquiring medicines manufactured by these sponsoring companies.  A handy tool!
NORD National Organization for Rare Diseases Muff ** 2/2/04
NORD has information on a number of financial assistance programs to meet the medication needs of those not covered by insurance. 
The Avonex Access Program BIOGEN PWMS ** 6/29/04
Patient Prescription Financial Assistance for Avonexf
Foundation of Caring Berlex Laboratories PWMS ** 6/29/04
Patient Prescription Financial Assistance for Bertaseron
Serono Connections for Growth Serono PWMS ** 6/29/04
Patient Prescription Financial Assistance for Rebif
The Copaxone Patient Assistance Program Teva Neuroscience PWMS ** 6/29/04
Patient Prescription Financial Assistance for Copaxone

Every week we add new link sightings which may be of interest, as reported by our visitors.  This will highlight new links you may want to investigate, before they disappear into the obscurity of some huge link listing.  If you come across any site which you think may be of interest, please e-mail us:   PWMS@PeopleWithMS.com with the site address and a brief description of what you found interesting on the site.  We'll include it in the next Newsletter.


News Sightings

We're repeating the Medicare Lottery headline (it's that important to our American contingent).  Always check out the News Page for the latest, breaking news.  

Medicare Lottery - From the Front - Federal Update

National Multiple Sclerosis Society

PWMS 6/26/04

ACT NOW! HERE'S YOUR CHANCE TO GET MEDICARE COVERAGE FOR MS Rx RIGHT NOW!

YOU CAN'T WIN…IF YOU'RE NOT IN 

Implementation has now begun of the $500 million nationwide Medicare demonstration project covering certain therapies for 50,000 patients who have multiple sclerosis, cancer, rheumatoid arthritis and pulmonary hypertension. This is a good chance to obtain comprehensive Medicare coverage for any one of the four MS self-injected disease modifying therapies from September 2004 through December 2005 (until the overall Medicare prescription drug benefit begins in January 2006). For those selected to participate in the demonstration, Medicare will cover 75% of your MS drug costs – more for those with low incomes – and coverage will allow patients to inject their MS therapies at home.   Check this out right now!  They are accepting applications for a lottery type of process.  There is a "first cut" lottery filing deadline of August 16 and a runners-up second lottery closing September 30. 

Download the application:  http://www.cms.hhs.gov/forms/cms10113.pdf

Medicare to Pay for Some Cancer, Other Drugs

ABCNews

PWMS 6/25/04

WASHINGTON (Reuters) - The U.S. government will pay for some cancer, multiple sclerosis and other medicines for 50,000 Medicare patients who otherwise would not have coverage until 2006, health officials said on Thursday."    Check this out right now!  They are accepting applications for a lottery type of process until September 30. 


FDA Designates Antegren for Priority Review

Elan Corporation

JackIL 6/28/04

Biogen Idec and Elan Corporation, plc announced today that the Biologics License Application (BLA) for ANTEGREN(R) (natalizumab) has been designated for Priority Review and Accelerated Approval by the U.S. Food and Drug Administration (FDA) for the treatment of multiple sclerosis (MS). The next step in the process is action by the FDA on formal acceptance of the application, which occurs within 60 days of submission. . . . Based on the FDA's designation of Priority Review for natalizumab in MS, the companies anticipate action by the Agency approximately six months from the submission date, rather than 10 months for a standard review.  Looks like Antegren is on the fast track to approval in the US, following swiftly on the heels of submission to the European Medicines Agency.

Research Bulletin

UK MS Society

PWMS 7/2/04

The latest UK MS Society Research Bulletin covers;  

  • Fatigue - Relating Fatigue to Nerve Fibre Loss
  • The Expert Patient - Reaction to the term "Expert Patient"
  • Nerve Fibre Loss - Linking Inflamation to Nerver Fibre Loss
  • Cannabis - Cannabis for Tremors ?
  • Stress - Does Stress Trigger Relapses ?
  • Carers - Support for Carers
  • Osteoporosis - Bone Loss in Men with MS
  • Beta Interferon - Long Term Follow-up of Different Doses of Avonex

Look at the April 2004 issue in Adobe PDF format, or grab it directly from this link.  If you haven't read the prior Bulletins, there's interesting information in the back issues, too.


The Financial Desk . . . 

For those interested in the stock market's take on the MS market (which has obvious ripple effects to available treatments) you might be interested in this little Pharmaceutical Equity Markets PDF from ING Financial Markets.


Recipes

We're starting a new section for recipes, since they are a popular chat subject.  And we're starting a new links page, Recipes, to capture them for posterity.  This week, we're featuring a couple of Lesley Anne's favorites.  If you have a favorite you'd like to share, e-mail it to us;  PWMS@PeopleWithMS.com 

CAESAR SALAD RECIPE Lesley Anne

2 cloves of crushed garlic
Salt and cracked black pepper
2 tsp of Dijon or dry mustard – (10ml)
2 x egg yolks
4 tsp of anchovy paste – (20ml)
2 x lemons, juiced
2 tbsp of Worcestershire sauce – (30ml)
1 cup of olive oil – (250ml)

5 slices of bacon, cooked to crispy
1/4 cup of shaved parmesan cheese (62ml)
1 cup of Croutons (250ml)

Salad

2 x romaine lettuces heads
Directions:

Caesar Salad Dressing

1. For salad dressing crush the garlic cloves in a wooden bowl and add a pinch of salt. Add the cracked pepper, mustard, egg yolks, anchovy paste and lemon juice and Worcestershire sauce. Stir vigorously. Add the olive oil in a steady and stir until emulsified. Add salt to taste.
Salad

1. Shred cleaned romaine lettuce leaves and add to salad bowl. Mix until salad is well coated with the dressing. 

2. put the bacon , croutons and cheese in the mixture...stir..

3. Serve and enjoy! ( You can half this recipe if you like)

Tomato Cheese and Basil Salad Lesley Anne

4 largish ripe red tomatoes, sliced
1/2 lb. sliced bocconcini (balls of fresh mozzarella) or other mozzarella
2 chopped green onions
1/2 cup slivered fresh basil
2 tbsp. balsamic vinegar mixed with 6 tbsp. good quality extra virgin olive oil

In a flat bowl, layer tomatoes, basil, cheese and onion. Repeat until all gone. Generously salt and pepper the tomato layer.  Drizzle salad with the oil and vinegar mix and let stand for 30 minutes before serving.


New on the Website

* * * We Need Your Help * * *

Helping Chatters Get Into Chat

People continue to have difficulties getting into Dreamchat.  Tell us in detail what you have to do to a firewall, anti-virus program, or Pop-Up blocker program in order to get in.  If you had to upgrade your Windows or Internet Explorer Service Pack, tell us from what, to what.  We will start a page devoted to all the different problems people have had, and how they have overcome them, as a resource page for new chatters.

DreamChat Trivia (repeated by popular demand)

  • New to Dreamchat and wondering how to make those neat little smileys and pictures in the text? Easy, here's the Cheat Sheet:

:) Smile   :* Kiss
:( Sad >-- Rose
;) Wink <love> Love
;} Wry <strobe> Strobe
:p Tongue <nuke> Nuke
:o Gasp <boom> Boom
:# Mad <star> Star
  • How do I copy and paste something?  Mark it as you usually would with the mouse.  Then use CTRL-C to copy it, and CTRL-v to paste it in the message window.

  • I'm a member.  I uploaded my avatar, and nothing happened.  What's up with that?  Even if your avatar is the specified 50 * 50 pixels, and no bigger than 15KB, there is no confirmation.  Apparently because DreamChat personnel review all permanent member's avatars to make sure they are acceptable.  (Whatever that means.)  If they are, they send back an approval in a day or so, and the next time you sign in, "poof" your new avatar appears.

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Visit our site and sign our Guestbook, including your e-mail.  Or send us a request;  PWMS@PeopleWithMS.com  We'll send you our HTML formatted newsletter each and every week.  (If your e-mail doesn't handle HTML well, view our newsletter on-line.)

News Letter Archive

Missed something from an old Newsletter?  Find it here !

7-2-04 6-26-04 6-11-04
5-31-04 5-21-04 5-15-04 5-7-04
5-1-04 4-23-04 4-16-04 4-10-04
4-2-04 3-27-04 3-20-04 3-13-04
3-6-04 2-28-04 2-21-04 2-14-04
2-07-04 1-31-04 1-24-04 1-17-04

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