Follow up has been atrocious, despite the requirements of the Medicare Final Rule issued in 2007. Statistics show it. UNOS knows it. They issued new "requirements" to set higher standards for reporting, and we'll have to see if that makes a difference.
Personally, I feel the only thing that will change the behavior of the transplant centers is enforcement, and that comes from alerting Medicare to violations of the Final Rule. I'm considering starting a campaign that alerts the Medicare Inspector General when a living donor does not receive follow up at the required six month, one year, and two year intervals. But it also requires the living donor to stay in contact with the transplant center; we have responsibilities, too. In theory, a hospital should lose its Medicare certification if the transplant center doesn't follow the requirements of the Final Rule (which also includes requirements for an Independent Donor Advocate, nutritional education, and so on).
Are you ready to invest the time and energy to make trouble for non-compliant transplant programs?