ELLIE'S BLOG on Living Well with MS

Is our glass half full or half empty ?

My neurologists recently submitted a request for Ampyra to my Medicare D Prescription Drug Plan  This is a new drug to help people with MS walk better by assisting the nerve message to go along damaged myelin sheaths. I was denied this coverage because it was not on their formulary.

As this drug costs over $12,000 a year it's obviously out of my budget. Therefore I will not be able to reap the benefits from this drug without some help to purchase it. As it's just been approved I understand that it may take time for it to be approved by prescription providers.  I'm hoping that they will fast track it on their formulary's.

This issue brings me to the core issue of drug costs especially for people with Multiple Sclerosis. There has been a drop in the costs for the average person who takes prescriptions drugs due to the increase use of generics. For the family budget this is a very big plus.

However, it's only in the past 10 years that prescription drugs have been developed specifically for MS. And these prescription interferon drugs (disease modifiers), Betaseron, Avonex, Copaxone and Rebif are widely used by those who can afford them($20-30,000/year) thru their drug coverage.

These drugs are all Biologics. Developing generics for these biologic drugs has been very slow. And an additional problem for those of us with MS is that these drug companies also have a very long extended time with a drug to be exclusive.  So generic drugs are not available. And I should add that these drugs as generic's  will not come cheaply.

For the first time people with MS had hope that they could moderate the downside of MS with these interferon drugs. And they have been so helpful to many people with Multiple Sclerosis. I myself have benefited from Betaseron and now from Rebif.

Now because of more understanding of the biology underlining Multiple Sclerosis with advanced technology more drugs to help us are coming onto the market.

The latest Drug is an antibody Tysabri which is also used for Crohn's Disease. In both cases it's used only when the 1st line drugs are not effective. This is a once a month intravenous infusion therapy in a clinic, hospital or MD's office.The cost is about $32,000 a year plus the cost of the center where the infusion occurs.

Yes,this is a very exciting time for people with Multiple Sclerosis. Just thinking of the positive improvements in  lives that these new drugs can bring to us is mind-boggling. Yet there is no doubt that our glass is half full.

The downside to all this is their costs. When you think of the way our Healthcare System is structured a person with MS is at a real disadvantage.

Our Health coverage comes through the workplace.  If a person with MS is working for a large company the cost of their drugs is spread out over all the employees. But if they are working for a small company there's more of a problem. Small companies do not have the numbers to absorb the higher costs easily. And many small companies do not offer Health Care coverage at all.  And if part time work seems like that's all a person can handle the chances of having Health Insurance Coverage is very rare. To insure yourself would be prohibitively expensive if you can get the insurance coverage at all.

I'm hoping very sincerely that this new Health Care Bill that passed will help to even things out.  We have such a indiscriminate way of giving people Health Insurance in our country. If you work for a large company you are usually covered. And even here how much you have in co-pays or limits varies. Working for a small company is iffier and self employed even more so.

Of course at age 65 or two years after you have been approved for social security disability there's Medicare. However that certainly does not cover all the costs. A lot of States have a program that helps seniors with limited income with the expense of Prescription drugs like Epic in N.Y.. Once you've lost all your assets trying to pay for these drugs or you can no longer work there's Medicaid.  This also varies from state to state . This last line of defense is good to have but wouldn't it be better to have help before you lose all trying to pay for the drugs?

This situation is very depressing and this is why I personally was in favor of the recent Health Care bill that passed.  This bill has much to offer us.  However, the details of how it will be implemented are being formulated right now within each of the agencies involved in it's implementation.

And of course the Health Care lobbyist's are in overdrive. The drug companies, the healthcare plans, the hospital's, the doctors etc. all want to protect their income. Which I respect. What I don't respect is gross profits made on the backs of people not being able to have healthcare. I personally feel that it's immoral.

But there are things we can do to help to make the implementation of this new legislation benefit us. We have our own lobbyist the MS Society. And the NMSS is really working hard lobbying for us at this critical time.

For example people living with MS could save thousands of dollars a year on their needed prescription medications through the legislative bill H.R. 3799. This bill would cap monthly out-of-pocket costs for prescription drugs at $200 per prescription, or $500 per month for those taking more than one medication. The National MS Society participated in a national call-in-day on April 13 along with many other patient advocacy groups.

If you have concerns like I have and if you are not an MS Activist you must become one. The  MS Society is on top of what's going on in Congress and will lobby for us and our needs.They will keep you informed and you can participate on many different levels to assist their efforts in helping us. For example you will be asked to call or e-mail your legislator on these critical issues.

They make it very easy. You are encouraged to comment on how the issues personally affect you or people you know.  Or you can just sign it after you have read it of course. But this is something positive you can do.

So go to  www.nationalMSsociety.org/MSactivist       and sign up become involved and do it at the level you are capable of . That's all anybody would want.

                                                      ellie