ESRD still at it
Joined: 12 Mar 2003
Posts: 1
Posted: Wed Mar 12, 2003 4:57 am Post subject: They now want to change the law for advocates
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If any patient out there is aware by the governments very own ESRD FED REGULATION a patient has a right to chose an advocate of their choice. This now is being challenged by TEXAS NETWORK and HCFA going along for a new interpretation of their own law to protect the industry. They had everything a secret until we came along and demanded hearings.They were caught with an industry in shams,not even doing the job that they were set up to do and that was to ensure patient care. What patient care? They gave bogus statistics and patients just now are beginning to feel safe. They are the industry and are protecting themselves..the industry.<
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>Ms Harbert needed this issue clarified in this case:<
>1. The definition of "advocacy" and any authority it implies.<
>(in other words it is only put in the Regs to look as if they will allow you to have a choice of a voice.<
>Hospitals have advocates that intercede. <
>In ESRD this means only the agency owned by the clinics and companies can do as they please. Just as they did before we came along. Everything was a secret.<
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>We have a patient in the hospital and had asked the very same ESRD NETWORK to help this patient. The clinic was told that they were to honor it.<
>That was in Jan as I recall. <
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>That very same clinic has yet as of yesterday to comply. When I asked the NETWORK to back up what they said before in a letter,they now want to change the rules.<
>This is a direct quote from the ESRD NETWORM:<
>I am sadden to know of XX current illness (they knew in January) and sincerely hope that improvement is noted quickly. I also realize your desire to help xx and understand you are anxious.<
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>They are hiding under so called confidentiality clause. Even though this clinic has dumped an African American in the past. This patient is now getting blood almost daily. It was stated over 10 units in a week.<
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>The clinic sent me a letter that was received yesterday. It dated a letter sent to the patient on March 3 stating that she was in receipt of the new release and as soon as she signed it,her request would be honored. After calling the patient to see if it was signed,to find out she never received it. Thank God the clinic Compliance Officer sent me a blank copy to let me know what their proper form was.<
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>I feel that with the stalling the patient is at undo risk and almost wonder if they arent wanting this patient to die. They now had the NETWORK allowing this to go on since January. Could someone be on the Network board from that company?<
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>This is a serious matter and will be conferencing Rev Sharpton and the reporter who is finishing the documentary right in TEXAS as well as others. It looks as if once again they are allowing this patient to be at risk. We might be doing a major rally in TEXAS. Once again your patient rights,Civil Rights and Human rights are being challenged. We are going to fight this to the very end. If this patient dies as they are all playing thier games. The ESRD NETWORK and the Clinic are going to be made accountable. The NETWORK has not done their job as contracted under the FEDERAL CONTRACT and the government knows about this patient and lets see if once again they will support the ESRD NETWORK that is allowing this patient to possibly die.<
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>They only do their job when it protects the industry. This patient is really sick and they want to find out what the definition of "advocate" is now and the patient is scared to death she isnt going to make it. Could this be what they want? After all patients were allowed to be dumped to die and they never saw the human faces of these patients.<
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>Not only have you been sold for dollars by your Drs,you also have been allowed to be the stock commodity ie: "cash cows" for the corps. Now they want to slaughter you silently and no one once again accountable.<
>Pretty harsh words,you better start getting mad at what is happening. It is simply about life and death.<
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>I personally will be in TEXAS to hold up a picket sign. I know others will also. This time we may be able to encorporate REV Sharptons group to let this government know that you can not be sold for dollars and have no rights.<
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>Arlene
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jfwag
Joined: 11 Jan 2003
Posts: 140
Posted: Wed Mar 12, 2003 5:17 am Post subject: Well....
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Arlene, it seems as though you and this board are making some real head way, heh? I had wondered about this type of scenario awhile back. It is now coming full circle. They dislike you and this board so much that laws are being challenged. Advocates are for people that just can't get it done on their own anymore and we all need an advocate like you. I remember the help you gave me with FMC over a particular subject and boy did they respond. Sitting on the ....and a vice president calls me because you had intervened. Let's not give up....
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Disgusted
Joined: 26 Jan 2003
Posts: 45
Posted: Wed Mar 12, 2003 5:25 am Post subject: advocate
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A patient may appoint whomever they like to speak for them. Whether the advocate is related such as family or friend. Network in Texas is getting carried away again. Please post which dump the patient was being treated at and telephone numbers for contact. I for one will not die in silence, family is aware of "the treatment" that dialysis patients must endure all in the name of profits.
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Listen Up
Joined: 12 Mar 2003
Posts: 1
Posted: Wed Mar 12, 2003 5:26 am Post subject: Attention all ESRD Patients and Family!!!!!
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It is time to stand up for your rights or they will be taken away! Yes, the networks want to take your rights to choose your own advocate away from you and your family. If this happens, any patient who asks questions will be retaliated against. It is a death sentence for all of you. <
>DE has documentation that the networks do not advocate for patients. No, your complaint goes right back to the clinic with your name in big letters so they know who to target. It will be worse than it ever has been. <
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>The goverment promised Standards of Care for dialysis patients 3 years ago. Where are they? This is just another example of how they are dragging their feet so the profit taking can go on. THEY DO NOT CARE ABOUT YOU OR YOUR CARE! <
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>IT IS TIME TO STAND UP AND PROTEST LIKE YOU HAVE NEVER PROTESTED BEFORE. IT IS YOUR LIFE, HELP PROTECT IT OR LOSE IT. YOUR CHOICE! :">
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Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Wed Mar 12, 2003 5:45 am Post subject: Fox guarding the hen house!
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A patient MUST have the right to any representation they choose; for crying out loud next thing you know the unit's social worker will be doing the advocating My life; my choice!!! Gosh, sometimes it seems as if prisoner's have more rights Lin.
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WAKEUP
Joined: 12 Mar 2003
Posts: 1
Posted: Wed Mar 12, 2003 6:30 am Post subject: You need to get mad
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It clearly appears that the ESRD NETWORKS have drawn a line in the sand. I for one will challenge this with all the advocacy groups that we have at our disposal.<
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>Everything in life has its time and its season. We now are strong enough to challenge them back. God forbid if anything happens to our patient. We have the best attorneys in the land and we have journalists and top advocacy groups that will help. I always have believed in giving the other guy a chance. In June it will of been 5 years of our lives trying to
ing fairness,patient rights and non industry self policing,and choices to all the patients on dialysis. To date we have had Horse and Pony Senate hearing or is it dog and pony show and nothing was done.We
have alerted the top of HCFA that the industry self-policing has left the patient at risk.<
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>This is what the ESRD NETWORK(your voice?) has done for you.<
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>1-They went up to the Senate hearings with not even accurate statistics. 3 years behind in reporting deaths.<
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>2-We have always included the NETWORK in patient dumpings. We are always told that there is nothing they can do. I feel that it is nothing they want to do. It amazes me that we can get them in units. All except David Hawkins who died. When the attorney filed against the NETWORK for not doing their job,HCFA hired a top lawyer to fight and defend the NETWORK and the patient died. All on government money guys.<
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>3-The ESRD NETWORK has had over 30 years to decipher the ESRD REGULATION of the patient has a right to an advocate of their choice. NOw they are asking for an interpretation? They have always felt that HCFA will protect them. HCFA needs to reevaluate and take care of their citizens. HCFA is only to provide them with legal assistance if they did their job. SO dumping David was sanctioned by them to have his death sanctioned. How many other deaths and dumpings have there been in over 30 years? Count on HCFA letting the NETWork give them the true statistics? PLLLLeaSE!<
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>4-They protect themselves so well ,that you cannot be allowed to find out now what companies the board members come from. Sounds democatic? They once again are being sanctioned and this is allowed by HCFA.<
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>5. HCFA has been so concerned over your care,that they have allowed,<
> a-selling of patients due to the fact that this group of physicians are immune from the Anti-Kickback and Stark Law.<
> b.They still are allowing the industry to self-police and allowing the status-quo to continue. In other words deaths are okay and dont have to be reported,just buried.<
> c-They have allowed you to be on the Stock market with you the patient as the only commodity.<
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>6. HCFA has allowed you to receive shortened care and they are aware of the math calculations and no standard. It is a free for all and you are dying and no one seems to care. Who owns the prescription pad the clinic or the doctors. Who do your doctors belong to first,the investors or the patient.<
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>I dont know about anyone else,but I will take action and HCFA can change the laws,after all they are not knowing what is in their regulations. What is an advocate. An advocate is more than a word. It is your right to chose to have help and a neutral voice. One that has been silent until 5 years ago. ]<
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>I have kept a paper trail on the NETWORK and if this patient dies,youve not seen me angered. I will picket and will raise my voice to court rooms and will challenge this as will our attorneys if need be. <
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>A conference call will be happening this week. I for one am not too proud to hold a picket sign in the State of TEXAS. I will fight this for all patients and I am sure many will join us.<
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>Remember HCFA has been aware of the problems with the ESRD NETWORK,and is telling every patient you are worthless and less of a citizen than anyone else in the country. Could it be that your deaths are okay?<
>Harsh words but must be verbalized. I for one will not allow another patient to die.<
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>Arlene
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TOP DOGS
Joined: 12 Mar 2003
Posts: 1
Posted: Wed Mar 12, 2003 6:55 am Post subject: PHONE NUMBERS AND FAXES
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THE CLINIC IS;<
>COLLUM AND CARNEY<
>CEO MR. Tom Simmons<
>phone number:<
>903-614-3000/or1-800-264-1599<
>fax903-614-3516<
>We are waiting for the records still.<
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>ESRD NETWORK:<
>Glenda Herbart<
>Executive director<
>1-972-503-3215<
>fax 972-503-3219<
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>Dr. Jeffrey Kang (could be a new name)<
>Director of HCFA<
>1410-786-6841<
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>Ida Sarasitis <
>Director of Network (the NETWORKS boss)<
>This one hurts as I really like her.<
>1-410-786-0066<
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>Let the above individuals know that you are not taking these actions lightly. They are to answer and protect you.<
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>I also want everyone to pray for our patient. We need to stay united and every person is of value. <
>Please hand the numbers out to family members and churches any one that cares. We will be getting other organizations to help. They only know you are serious if you let them know you wont go off to slaughter. Your lives are worth it. If you stay silent,it could be you without a voice. Please be polite. Let them know you are serious. The more calls the more they take us serious.<
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>They can feel free to sue me,as this is what it may take.<
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>Arlene<
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