The disabled are usually at the bottom of the poor, unable to pay for good medical care or housing. At least there are government programs in the United States to make sure that the disabled can take care of themselves and their families. Without these safety nets, the disabled have no way of working to take care of themselves or to pay for needed medical care or drugs. The government of Haiti will need to think about how they are going to care for people that cannot care for themselves. Just thowing the disabled to the wolves and forgetting about them is not the way to do this. Add the pubic stigma of being disabled and you have a recipe for disaster. With no government help and most companies refusing to hire the disabled and you have a group that is guaranteed to starve to death on an island that they have no way of getting off of. The United Nations has a significant group on the ground in Haiti that is used for peacekeeping but can and should be used to help the disabled. There should never be a group that is so shunned that they are allowed to starve to death with no medical help and no one cares. Especially where these people are disabled because they were the victim of a natural disaster, they did not create their problem, they are just trying to live through it. There must be rehab programs put in place to help the newly disabled to get the most out of their situation and to train them for jobs that they can do. Everyone wants to be useful and to work and take care of themselves and their family.

Doctors cannot work like the government – run for years in deficit and then print up new  money to pay for the previous losses. They need to be able to pay for bills and salaries as they come in and if they do not get enough money from patients coming in then they have to close down. That is in essence what is happening to the Medicare recipients and local doctors. They cannot afford to take care of us at the rate the federal government pays out so they flat out refuse to see us. So much for the medical coverage handed out by the government. I paid huge sums of money to the tax structure of this country before I was injured. As a software consultant I paid all that was owed so others could be helped and that I would be if something terrible happened. Well that time was three years ago when a hit and run driver ran me down and left me for dead in the street. As a tertraplegic stuck with complex regional pain syndrome I find it all but impossible to hold down a job because I am hospitalised as least once a month for pain or things tied to the pain. The last week of the month is back to back visits to all my doctors so we can figure out how to deal with problems with my spine and infections that are in the bone. So I live off of SSDI and hope and pray that Medicare allows my doctors and hospitals to continue to see me. My pharmaceutical issues would blow most people away and to show how fun things have been I hit the doughnut hole in June, and blew past it in August and am now having Critical Care government payments covering my drugs at 95%. That is until next year when I somehow have to find $2500 to get though the doughnut hole again. I’m hoping my pain doctor can get me on cheaper drugs soon, and that is assuming he will still see me after the new medical bill becomes law.

There are many things to be fixed in our medical system, but the way we are doing it now will guarantee the death of thousands. If we cannot see our doctors and hospitals and get the drugs we need at a rate we can afford, then we might as well throw in the towel and stop pretending that Medicare pays for things. Lets start thinking about how doctors pay for their bills and how they can stay in business and allow Medicare the pay at those rates or we will soon see a time where Medicare is a terrible thing to have to deal with. Here is to our Senate and House members to talk to everyone involved and forget about the insurance companies and lawyers who are killing out medical system. With the bill going through congress we are all running out of time.

We are not sure if it is just a good year but we are reporting on major medical advances that are bringing dramatic increase in life to those with spinal cord injuries. We will be watching for information on these 20 patients as their become stronger and are able to do more because of rehabilitation. A real bonus is that the stem cells used are from the patient themselves, without the need of stem cells from donors like umbilical cord cells. By dramatically decreasing the chances of cancer or rejection and working hard on the rehab side these researchers have created a procedure that may get a large number of people out of their wheelchair. Many researchers have said that they were working toward getting to this point, but this is the first using heir own stem cells to actually get there.

For more information take a look at the journal Neurorehabilitation and Neural Repair where the research was reported. Note that the researchers are still looking for possible problems or issues with the procedure and are continually sending out questionnaires to those involved with the study. Since there is no long term study of this procedure there is no way to tell if there will be problems years in the future. That is the problem with research, you may get a major increase in functionality now but end up with problems in the future. This is one of the reasons why the FDA takes such a long time to finally give their ok to procedures started in Europe or Asia. They like to see several studies across many years that proves that the procedure is both safe and reliable. One of the last things you want to do is pay to put yourself through this just to find out that it either does nothing or creates a cancer that has it’s own issues.

One would think that this was the script from a “B” movie in Hollywood, but states all over the country are debating the use of the New York protocols to determine what to do during an emergency and how to ration supplies that run low during a virus outbreak. However, public opinion has been strongly against any kind of rationing like this, and officials have worked hard to keep the public out of meetings that discuss these protocols. Our only safety net is that most states have not implemented this plan as law and most are worried what would happen to public opinion if they did put it into law. While officials are trying to state that this is for the national good and that work must be done to make sure medical care is available neglect to explain how this is going to occur. No one in any meetings to discuss the New York Protocols are willing to say that the will take ventilators and other lifesaving medical equipment from a person merely because they are disabled. We have not heard of something this sinister since the Nazi plan to rid the Reich of people that were “broken or not whole”. People that were forced to live in nursing homes because of disabilities were carted off to the same killing centers that the Jews were sent to. This law appears to allow the state to do the same type of thing under the veil of doctors and hospitals trying to give care to those that desperately need it.

People that live in states that frequently have disasters like Florida, Louisiana and California need to look carefully and see what their state officials are working on in this arena. If your state is looking to implement the New York Protocols you need to call everyone you know to put a stop to it. If this is allowed to become law then the governor of your state can decide at will that the disabled do not deserve to live and will be denied medical care that they may need to survive because others are felt to have a better chance to live. The control of life at this level is disgusting and it is sad that any doctors would be willing to put time and effort to make this a reality. No one should have the basic right to control who lives and who dies without having the family involved.

This story was written a little tongue and cheek, but considering the material and how the disabled community is treated by doctors and hospitals that it worked. Finally, after years of being ignored or telling us the pain was all in our heads, or that we are all drug seekers, a study finally comes out laying out at least part of the truth. SCRN hopes that this reminds doctors and nurses that we are humans that are usually in pain because of our injuries. Because of the problems described in this report, it is obvious that new federal laws need to be implemented and enforced. Few things are worse than dealing with pain at 9.5+ and the medical staff that you are depending on are indifferent to the fact that you are being torn apart internally. At the very least hospital should look at the pain medications you are on now and any additional ones you needed previously so they can get your pain level down. In the mean time I would strongly recommend that everyone write up a document that has the following information in it:

• What happened in the original accident, dates, times, hospitals, doctors and medications.
• Any additional information including times you had to go back to the hospital.
• Complete breakdown of all medications including pill information, doctors orders, and prescription number and pharmacy info.
• All doctor’s names, addresses, phone numbers and hospitals that they have worked on you through.

This paperwork, which will probably be around 3-5 pages should be given to any doctor at a hospital that you are dealing with. It will help them get up to speed and keep you from having to fill out the same paperwork over and over again. This will also let the nurses and doctors know that you are very serious about your health and that you will expect the same from them. This would guarantee you of better service, but we at SCRN have found it to be the most helpful document that we bring when we have to go to the hospital.

It is awesome to see work that can change how spinal cord injuries are worked on without the need of embryonic stem cells. There are many branches of science that is working on the issues of neck and spinal cord injuries and each has a different way to tackle the damage that is caused. Plus because NT-3 is not based on human tissue there is not the threat of rejection. Ultimately there will probably be a multiple targeted method used to cure spinal cord injuries. Each will fix certain aspects of the damage and leave openings for other technologies to make their repairs until the damage is gone. This is going to be a long and laborious process as we find out the spinal cord is much more complicated than first thought. It is not just a freeway for messages to move back and forth between the brain and the arms and legs. THe spinal cord makes its own messages and changes the structure of messages as they move through each section of the spine. Researchers need to fully understand this language and why these messages change before we try to make our own modifications. Most patients that are disabled are already in enough pain and suffering, we don’t need to make things worse in the name of increasing the speed of science.

There is plenty of science that needs to be understood and converted from animal research to human procedures without talking folks into making themselves guinea pigs. While some of this very dangerous work has made some small progress, most have either created more pain or out of control cancer cells at the point of injury. While it is difficult to watch loved ones unable to move or do the things they used to do, we need to let the researchers do their work using the scientific method. The best we can do is push for more funding and create environments so that new companies and ideas can pop up so we have the best and fastest chance for major breakthroughs like the one here about NT-3.

While additional studies need to be performed on animals to prove the safety of BBG, this is another arrow in the quiver of tools doctors may soon have to use on spinal cord injury patients. Another interesting aspect of this chemical is that it works even after significant time has past in the injury. Some procedures work but only after the first few minutes to hours of the initial injury. This includes dramatically cooling to the damaged area so that swelling does not have time to crush and destroy neurons around the point of impact. It is hoped that BBG works well in monkeys as it does in rats in the next set of studies. Monkeys are much closer to us in chemistry than rats and as such gives researchers a better idea of how drugs interact in the human body.

Drugs based on chemicals like BBG are a major breakthrough because they  are not tied to DNA like stem cells that can not only grow out of control but also be rejected by the host. Because this would be a drug like aspirin, doctors would not have to tissue type patients before use of BBG. This shows that research across the whole spectrum of ideas is needed to get a real cure from spinal cord damage. Only putting our eggs in one basket (like stem cells) makes us myopic to new ideas and chemicals that can do amazing things without the problems and issues of stem cells.

While it is wonderful that someone has started to lift a finger in Georgia about how hospitals treat the disabled, when do we do this with the rest of the country. THere are stories about the disabled not able tog et service, being dropped off in slums so the hospitals don’t need to care for them, or sending the disabled to another hospital because the¥ can’t make much money from Medicare. THere are so many problems that it is doubtful that they can be fixed in our lifetime, but we can start somewhere. Taking what was found and promised in Georgia, the disabled community needs to demand equal accessibility and service from every hospital and clinic in the country. No one should be ferried to another hospital because of money. Federal controls of the medical industry has been fought over for many years but it looks like the patients are going to finally get their say this year. Call your congressmen and senators to let them know what you expect and that the disabled are real people that deserve what everyone else gets.

Remember, just complaining to a hospital directly will not solve the problems that the disabled have with them. These entities are in business to make money, and at your health expense. They do not care that you do not get medication or that they create bedsores that could send you to a nursing home center. But they do care when the federal government comes in and starts twisting arms to do the right thing. Medicine is not what it used to be. Doctors used to work with their patients and actually listen to them. This has degenerated into mass production medicine where doctors see each patient for exactly 37 seconds before moving on to the next. Who cares if the patient is not cured or if their pain has not been reduced. As long as their insurance has been billed the maximum possible and the minimum done for the patient by law – then everything is just fine. NOT IT IS NOT! Until we demand better things will not change. Do not expect hospital and doctors to do better until we whack them over the head with laws and ADA lawsuits. These only happen when the disabled call lawyers and congress. Yes, it is a pain in the neck to force these entities to actually follow the law but that is our duty to everyone else.

The medical community allows people with hepatitis C to work in hospital settings. The patients are never informed and as such are left open to be infected by anyone on staff that has this disease. There is a case in Denver right now where a hospital tech may have infected 6000 people with her hepatitis C. Now we have a situation where an IV drug user at the hospital may have ruined the lives of all these people because she was stoned on hospital pain killers. Even if the courts throw away the key and she gets life imprisonment for her deeds, what does that do for all the victims? Laws must be put in place that forbid anyone with hepatitis to work in a hospital setting and that routine drug testing happens for all medical staff. Anyone that is found to be a user is immediately removed from the hospital until they have completed a full anti drug program. Plus, better verification of powerful drugs so that managers and DEA know how the drug is administered and who had access to it. Perhaps any injectable pain killer must be administered by two people, the second being the charge nurse or other manager. At that time a drop can be tested to show that the needle indeed has the prescribed medicine before it is administered. 

There are many types of technology that can be employed to try and stop this problem, but the real way is to make sure those working on you in the hospital are playing by the rules, are not stoned on drugs, and are not harboring dangerous diseases. Think about this the next time you are in the hospital and a nurse is giving you an injection. While congress works on a new bill to overhaul our medical system, something to protect the patients against this type of danger should be done now.

A pilot study showed that the procedure appeared to be safe, but not many patients have had this done to show the long term effects of this surgery. Hopefully other doctors will try to duplicate the work in their labs to see not only now well this works but where else it can be used. For quadriplegics it would be great news if they could move their arm based on moving other areas of the body. While this is definitely a work around to the problem of why nerves don’t repair themselves in the spine, it gives doctors ideas on what can be done. There is always room for medical procedures that are safe, effective, and give the patient back movement  that had been lost because of an accident or brain damage.