I wanted to share this response with you from a comment made to my "This is Awful" post. I really appreciate the research Julie has done on this topic. She is a mother of a child with CF, so I truly value her feedback.
It saddens me that the transplant patients in AZ who happen to be so lowincome that they qualify for Medicaid will no longer have access totransplants. Although I want to find out the background of why thishappened because I think it is important to research what caused thedecision in the first place so that perhaps other patients at or below thepoverty level do not have to suffer the same consequences. There has beenmuch speculation of fault in this instance, but for me it is not so muchabout fault, but about what preceded the decision that needs more scrutiny.After extensive research I found that much of this rationing is directlyrelated to what is coming with the new federal health care reform law. AZwas the first to catch public scrutiny but it won’t be the last.AZ is currently facing the worst debt crisis in that states history. Thisdecision in AZ was not done lightly, and since states cannot print their ownmoney, they are going to have to do something to save their state from beingbankrupt and issuing IOU’s like other states already bankrupt. There werereviews, legislative voting & sessions, meetings, public input,recommendations from UNOS & transplant surgeons etc. I have summarized muchof it, but all of that documentation can be found here:spxAZ tried to eliminate coverage for Gastric Bypass Surgery but Federalrequirements prohibit the elimination of this benefit. (I do find itstrange that the federal requirements prohibit weight loss surgery frombeing eliminated but say nothing about transplants.) The benefit fact sheetfrom AZ is hereàhanges_factsheet.pdfNone of the changes affected children’s benefits whatsoever. Also, memberswith incomes at or below 100 % of the federal poverty level (FPL) who arealso Medicare eligible will continue to receive Medicare covered servicesthat are no longer covered by AZ. For members with incomes greater than100% FPL who are also Medicare eligible will not receive the Medicarecovered services that are no longer covered by AZ.Lung transplants are still covered for patients in AZ who are 21 andyounger. The details of the new law on transplants in AZ (entire documenthere:ary10_6_10.pdf )Summary of transplant coverage in AZ follows below:Heart Transplants- Covered except for non-ischemic cardio myopathiesHeart & Lung Transplants- Covered for members 21 and youngerLung (single and double) - Covered for members 21 and youngerLiver Transplant- Covered except for members with a diagnosis of Hepatitis CKidney (cadaveric and live donor)- CoveredSimultaneous Pancreas/Kidney (SPK)- CoveredPancreas after Kidney (PAK)- Covered for members under 21Visceral Transplantation (includes intestine alone, or intestine +pancreas,+liver)- Covered for members under 21Pancreas Only- Covered for members under 21Stem Cell Transplants- Covered in all instances except for AllogeneicUnrelated for members over 21Cornea- coveredBone- coveredI did find out that transplant eligibility remains for patients currently onthe transplant list, so people we are on the transplant list are not lefthigh and dry. It is the new law and you can find it on page 25 here:I have friends in AZ and specifically one who recently lost her daughterfrom cf who was a tender age of 10. I know AZ is suffering the worsteconomic decline in that state’s history and they have been trying sincebefore 2009 to figure out where they will be able to keep themselves fromgoing bankrupt. Since the new health reform law is going to force the stateto dramatically expand the number of patients on Medicaid in AZ, theystarted looking there first.Medicaid is a program for very low income individuals with no agerequirement that each state funds a large portion of with some help from thefederal government. The state is allowed to make some rules, but some comefrom the federal government cms.gov. AZ found they could save money byreducing or waiving the requirement to provide non-emergency medicaltransportation for certain populations. In other words they wanted to nolonger provide coverage for non-emergency transportation in ambulances.Since the federal government mandates this particular coverage, AZ wrote tocms.gov to get their permission. It would have saved AZ $4,722,041 if thiswould have been done. The letter to the feds was sent just this past summerin August 2010 and all the info I just stated can be seen in the actualletter here à10.pdfAs of today there has been no response from the Center for Medicare &Medicaid service.
It saddens me that the transplant patients in AZ who happen to be so lowincome that they qualify for Medicaid will no longer have access totransplants. Although I want to find out the background of why thishappened because I think it is important to research what caused thedecision in the first place so that perhaps other patients at or below thepoverty level do not have to suffer the same consequences. There has beenmuch speculation of fault in this instance, but for me it is not so muchabout fault, but about what preceded the decision that needs more scrutiny.After extensive research I found that much of this rationing is directlyrelated to what is coming with the new federal health care reform law. AZwas the first to catch public scrutiny but it won’t be the last.AZ is currently facing the worst debt crisis in that states history. Thisdecision in AZ was not done lightly, and since states cannot print their ownmoney, they are going to have to do something to save their state from beingbankrupt and issuing IOU’s like other states already bankrupt. There werereviews, legislative voting & sessions, meetings, public input,recommendations from UNOS & transplant surgeons etc. I have summarized muchof it, but all of that documentation can be found here:spxAZ tried to eliminate coverage for Gastric Bypass Surgery but Federalrequirements prohibit the elimination of this benefit. (I do find itstrange that the federal requirements prohibit weight loss surgery frombeing eliminated but say nothing about transplants.) The benefit fact sheetfrom AZ is hereàhanges_factsheet.pdfNone of the changes affected children’s benefits whatsoever. Also, memberswith incomes at or below 100 % of the federal poverty level (FPL) who arealso Medicare eligible will continue to receive Medicare covered servicesthat are no longer covered by AZ. For members with incomes greater than100% FPL who are also Medicare eligible will not receive the Medicarecovered services that are no longer covered by AZ.Lung transplants are still covered for patients in AZ who are 21 andyounger. The details of the new law on transplants in AZ (entire documenthere:ary10_6_10.pdf )Summary of transplant coverage in AZ follows below:Heart Transplants- Covered except for non-ischemic cardio myopathiesHeart & Lung Transplants- Covered for members 21 and youngerLung (single and double) - Covered for members 21 and youngerLiver Transplant- Covered except for members with a diagnosis of Hepatitis CKidney (cadaveric and live donor)- CoveredSimultaneous Pancreas/Kidney (SPK)- CoveredPancreas after Kidney (PAK)- Covered for members under 21Visceral Transplantation (includes intestine alone, or intestine +pancreas,+liver)- Covered for members under 21Pancreas Only- Covered for members under 21Stem Cell Transplants- Covered in all instances except for AllogeneicUnrelated for members over 21Cornea- coveredBone- coveredI did find out that transplant eligibility remains for patients currently onthe transplant list, so people we are on the transplant list are not lefthigh and dry. It is the new law and you can find it on page 25 here:I have friends in AZ and specifically one who recently lost her daughterfrom cf who was a tender age of 10. I know AZ is suffering the worsteconomic decline in that state’s history and they have been trying sincebefore 2009 to figure out where they will be able to keep themselves fromgoing bankrupt. Since the new health reform law is going to force the stateto dramatically expand the number of patients on Medicaid in AZ, theystarted looking there first.Medicaid is a program for very low income individuals with no agerequirement that each state funds a large portion of with some help from thefederal government. The state is allowed to make some rules, but some comefrom the federal government cms.gov. AZ found they could save money byreducing or waiving the requirement to provide non-emergency medicaltransportation for certain populations. In other words they wanted to nolonger provide coverage for non-emergency transportation in ambulances.Since the federal government mandates this particular coverage, AZ wrote tocms.gov to get their permission. It would have saved AZ $4,722,041 if thiswould have been done. The letter to the feds was sent just this past summerin August 2010 and all the info I just stated can be seen in the actualletter here à10.pdfAs of today there has been no response from the Center for Medicare &Medicaid service.