Blue Cross Blue Shield
The Blue Cross and Blue Shield Association is a national federation of 37 independent, community-based and locally operated Blue Cross® and Blue Shield® companies.
Blue Cross Blue Shield
The Blue Cross and Blue Shield Association is a national federation of 37 independent, community-based and locally operated Blue Cross® and Blue Shield® companies.
Blue Cross Blue Shield: Cover therapy treatments for Reed
Our 4 year old, Reed, has experienced developmental delays in all areas since he was an infant. A recent brain MRI has shown some neurological abnormalities. He has received speech, physical, and occupational therapies since he was a year old. He initially received therapy services from our local Early Childhood Intervention program, but began receiving private therapy services at the age of 3. He has made steady progress with consistent therapy, but it is anticipated that Reed will continue to need therapy over the years to reach his full potential. Last year, Reed was on a BCBS PPO insurance plan through my employer that covered all of his therapies through home health. He is now on a different BCBS PPO through my husband's employer as of August 2018. From August to October of 2018, this insurance plan covered a home health agency coming to Reed's daycare for his therapy. This allowed him to receive therapy while my husband and I both worked full time in order to make enough to cover the cost. Although the therapy was "covered," we are required to pay the full cost until we meet a high deductible. BCBS has recently denied more therapy visits for Reed stating that they have a policy of only covering home health visits for children who are unable to leave their house. When the therapy company asked to see this policy in writing, BCBS has been unable to produce it. During a peer to peer review with Reed's doctor, the insurance company said they would cover the visits if the home health agency billed them as "not in the home." However, BCBS has a contract with the home health agency stating they must bill the therapy as being in the home. So BCBS asked me to tell the therapy company to do something that they have a contract with the therapy company stating that they cannot do. Just 3 months ago, they covered his visits through home health. They are now trying to force us to take Reed to an outpatient facility if we want his therapy visits to count towards our deductible. We are unable to do that without one of us significantly reducing the amount we work, and therefore, our income to be able to pay for these therapies until we meet the high deductible. I believe this is a move by BCBS to keep us from meeting our deductible so that they will not have to do their part and begin paying for services once the deducible is met. They are enacting "policies" at random and suggesting billing changes that they know the therapy company cannot do as part of a game to avoid providing coverage. Home health is not solely for children who are unable to leave their homes. I am a home health speech therapist myself and none of the 20+ children I have worked with over the past year have been confined to their homes. Various insurance companies, BCBS included, have covered services for these children so that they could receive therapy and their parents could continue to work or be available to care for other children in the home while therapy was done. Additionally, BCBS has imposed a 60 visit limit for all therapies. This means that they will only allow a few months worth of therapy to count towards our deductible. It will take 47 visits for us to meet our deductible. Then BCBS will cover 13 before we will again be responsible for the full cost. Reed needs consistent, year-round therapy for years to come. Visit limits are based on the therapy model for adults recovering from strokes and brain injuries where they receive intensive therapy over a short period of time. It is RE-habilitative. Therapy for children is habilitative. They are not recovering lost skills, but gaining them for the first time. That requires more than just a few months of therapy. The combination of denying home health and an unreasonable visit limit will bankrupt our family or force us to not be able to get him the help he needs. We are not looking for a handout but just asking BCBS to provide the health coverage we are working hard to earn and pay for. Reed has been making good progress with therapy and deserves the chance to gain the skills he needs to succeed in life. Please help us appeal to BCBS not only for Reed, but the thousands of other families being put in this position by these "policies" that insurance companies use to avoid meeting their responsibility to cover services.
Free Ahed Tamimi
My name is Nasri Akil from Toronto, Canada. I started this campaign to support" Ahed Tamimi", her mother "Mariam", her cousin "Nur" and the other kids detained by the evil hands of the Zionists of the fake state of Israel. In a desperate hope to get enough signature to put pressure on decision makers to do something about the constant twisted detention of Palestinian kids. In turn this will expose the evil of the zionists and pressure the international community. I would like to mention here that this petition has nothing to do with race or religion or ethnicity. It's pure right against wrong. Zionism is not Judaism. Judaism is a religion not a race. Many Jews are not Zionists. Most Zionists are not Jews. Many Zionists hate Jews. Opposition to Israel is NOT anti-Semitism. Ahed Tamimi, 16, was arrested ( kidnapped actually ) by Israeli forces in the middle of the night. Since she was a young child, she has been active in weekly demonstrations against Israel’s theft of her family’s land in occupied Nabi Saleh. But as Tamimi stands against Israeli occupation, she underscores: whenever a people face oppression, we must show solidarity. Israeli soldiers shot Ahed Tamimi's relative in the head, leaving the teenage boy in a coma, and then invaded her family home. She demanded that the occupying Israeli soldiers leave her property immediately, shouting "don't touch me" and "leave!" Now she's in Israeli military detention, where 75% of Palestinian children report assault. Ahed is a child, and like thousands of Palestinian children she could be humiliated and abused if we don't get her out fast. She has become another child statistic of the countless other children detained illegally in Israel. Her court date is December 25th, 2017. She was taken into question at the Moscobiyeh prison, notorious for it's dungeon cell, torture tactics fully utilized on children, and extensive harassment. She was put in isolation, left in an icy cell, without proper food. In fives days she was moved three times. Why? To exhaust and break her. When her mother arrived to be there with her, she too was arrested. We demand that Ahed and all Palestinian children are released from Israeli prisons now. The international community must put an end to the ill-treatment and detention of Palestinian children. Enough is enough. Ahed Tamimi represent all the innocent kids in the Isareli detention and represent the Palestinians struggle against the illegal occupation of Palestine. Since 1967, Palestinian children in the Occupied Palestinian Territory have been living under Israeli military law and prosecuted in military courts. Israeli military law, which fails to ensure and denies basic and fundamental rights, is applied to the whole Palestinian population. Israel is the only country in the world that automatically prosecutes children in military courts that lack basic and fundamental fair trial guarantees. Since 2000, at least 8,000 Palestinian children have been arrested and prosecuted in an Israeli military detention system notorious for the systematic ill-treatment and torture of Palestinian children. Around 500-700 Palestinian children are arrested, detained and prosecuted in the Israeli military court system each year. The majority of Palestinian child detainees are charged with throwing stones, and three out of four experience physical violence during arrest, transfer or interrogation. Unlike Israeli children living in illegal settlements in the West Bank, Palestinian children are not accompanied by a parent and are generally interrogated without the benefit of legal advice, or being informed of their right. They are overwhelmingly accused of throwing stones, an offense that can lead to a potential maximum sentence of 10 to 20 years depending on a child’s age. AHED TAMIMI will go to trial on Christmas Day for slapping an Israeli soldier, illegally trespassing on her property, the day after her 15-year-old cousin was shot in the face. In December 2011, Mustafa Tamimi was killed during a protest in the village when an Israeli soldier shot him in the face with a tear gas canister. One year later, Israeli soldiers shot and killed Rashadi Tamimi in the village. One wonders why the "slap" is the Crime? I decided to do something about it and start with what I can. So that's why I am here asking you to help me help Ahed, her family and all the other kids. I also started a fund raising campaign on "GoFundMe" hoping to raise enough money to hire as many legal advisors to support Ahed and the others legaly in the court and get some justice. I mean enough is enough...I can't sleep I can't eat and these kids are experiencing all of that twist. Someone must do something. This is not right. This is not humanity. We cannot make this acceptable by doing nothing. I earnestly ask that at the very least, we make some noise in support of Ahed Tamimi and the other children that are held prisoners with no charge, no defense, all in violation of international laws. She is one, but we are many. It takes a united front to add pressure, to induce accountability and hopefully give freedom to the oppressed, weak and innocent. To Ahed and all the children in Israeli jails: We stand by your side, and are holding you in our hearts. We will not give up until you are free. You are not alone. As a wise man ounce said: "Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible" Sign. Support. Make Noise. Add Pressure. Be Human. what if Ahed was your daughter, sister or just a friend? What would you do?
Independence Blue Cross: Approve the drug Avastin for my Mom
My mom has been battling Non-Small Cell Lung Cancer (NSCLC) for over three years. She has gone through countless chemotherapy cycles with various drugs and months of radiation. Throughout it all, she has had terrible side effects like severe nausea, vomiting, loss of balance, and numbness in her legs and feet. However, she is a strong, stubborn person and refuses to give up. Unfortunately, Independence Blue Cross has given up on her. They have denied my mom a life saving drug called Avastin (Bevacizumab). Avastin is a tumor-starving drug that blocks blood flow to the tumor thereby causing it to stop growing and shrink. She has been given Avastin in two previous cycles of chemo and had good results with it. It is important to note that Avastin is a mainstay of standard systemic therapy in advanced NSCLC and FDA approved for that purpose. To date, the incorporation of Avastin into her chemotherapy has kept her cancer from metastasizing to new sites in her body. Avastin combined with a chemo drug Taxol (Paclitaxel) has been the secret to disease response and stabilization in my mom's situation. She has tolerated this combination the best of any regimen to date. Avastin alone did not work for my mom and in her situation it has worked only in combination with Taxol. Although she has Stage IV cancer, she has had dramatic improvement while on Avastin and Taxol. Independence Blue Cross, please approve Avastin for my mom.
China: Release the 1 Million Uyghurs Detained in Nazi-Style Concentration Camps
China: Release The 1 Million Uyghur Detainees Held Illegally In Nazi-Style Concentration Camps By Torchlight Uyghur Group (Mesheluyghur@gmail.com) www.facebook.com/torchuyghur/ https://twitter.com/torch_uyghur http://blog.freedomsherald.org/ This Petition Is Also Available In The Following Languages: Turkish (Turkçe), German (Deutsch), Japanese (日本語), Chinese (中文), Traditional Chinese (繁体字), French (Français), Arabic (عربى), Uyghur (ئۇيغۇرچە), Slawyan (Kiril), Russian(Pусский) January 20th, 2018 Many media organizations around the world have recently reported that a large portion of the Uyghur population is being detained either in jails or in so-called “re-education camps” (http://freedomsherald.org/ET/unb/ while their children are being kept in countless orphanages in the East Turkestan. Recently, we have learned from official sources inside East Turkestan that the number of the Uyghurs currently being held in these Nazi-style political “re-education” concentration camps is more than 800,000. That is a number known officially inside East Turkestan, but all the unofficial numbers we obtained from various sources exceed one million. According to the 2010 Chinese census, the Uyghur population in East Turkestan was 10,000,370 (https://en.wikipedia.org/wiki/Xinjiang This means that about 10% of the current Uyghur population is locked up. The conditions of the concentration camps are horrific because of the fact that such a large number of Uyghurs are locked up in relatively small and crowded spaces. We were told by several people who fled China recently that people even cannot lie down during the night with their backs on the floor; instead, they have to sleep sideways with all the adjacent bodies touching one another. We have also learned from some Uyghurs who recently lost their close relatives in the concentration camps that a significant number of Uyghurs are losing their lives in those camps every day. The families of the victims are just receiving their dead bodies from those overcrowded concentration camps. The local authorities are not giving back the bodies of the younger Uyghurs died, instead, just burying them in the nearby empty fields. These are just a few of the many examples of the horrible conditions in these concentration camps. How did those more than one million people end up in jails, concentration camps and orphanages? It is extremely difficult to obtain such information in China, but we have managed to get information on some individual cases from the relatives of those victims’ living outside China (The report titled “Political persecution of the Uyghurs – Brief description of some individual cases” at http://freedomsherald.org/ET/unb/ The Uyghurs are one of the ancient peoples living in the heart of Asia. They have a long and proud history, and a rich culture. Throughout the history, the Uyghurs have been a great contributor to the world peace and prosperity. Due to their geographical location along the famous Silk Road, they have been a major force in the cultural exchange between the East and the West. We strongly believe that the Uyghurs are an indispensable part of the wider international community and will continue such contribution to the world’s ethnic and cultural diversities in the future. Similarly, the Uyghurs will contribute to the world's peace and prosperity, just as they have done in the past. Therefore, the Uyghurs have every right to live in peace with dignity, and to continuously prosper, as any other nations on the surface of our mother Earth. However, in the recent decades, the Chinese government has banned the Uyghur language from its use at all levels of education in East Turkestan, outlawed Uyghur literature (by banning and burning historical and literature books written in the Uyghur language), restricted, criminalized and attempted to eliminate Uyghurs’ religious belief and practice, and has systematically flooded East Turkestan with Han Chinese migrants in the name of “developing the West”, and thereby marginalized the Uyghurs in their own homeland. And now the Chinese government is openly killing the Uyghur people, too, in those Nazi-style Chinese concentration camps by implementing a state-sponsored ethnic cleansing policy. If we don’t get help immediately from the United Nations and from the international community to stop the Chinese government from what they are doing towards the Uyghurs in East Turkestan, the Uyghurs will keep dying and disappearing in large numbers in those Chinese concentration camps (http://www.freedomsherald.org/ET/images/image201801_13.jpg and will soon face an unprecedented threat to their very existence. Therefore, we appeal to all the international communities and human rights organizations not to ignore the Chinese government’s crimes against humanity – the crimes currently being committed against the innocent Uyghur people. We appeal to the United Nations and other international human rights organizations to demand the Chinese government to release those 1 million Uyghurs, and send investigation teams to East Turkestan and find out: ● Where are those jails, concentration camps and orphanages? ● Why and where those one million Uyghurs are being detained? ● What are they eating and where and how are they sleeping? ● What are they doing during the day? ● What are their current health conditions? ● What are the current death rates among the detainees? ● What is happening to the children/siblings/parents of the people held in jails and concentration camps? We, the Uyghurs, are powerless and helpless at the moment. As such, we cannot defend ourselves against the Chinese government’s atrocities and cannot fight this battle for our survival alone. We need the support of the global community. If tens of thousands of people from around the world sign our petition, it may be possible that the United Nations will make a commitment and will act to stop the tragedy that the Uyghur people are facing today. Please join us in our fight to end the appalling atrocities happening in East Turkestan. Please sign and share this petition. Thank you! About the Uyghur People and East Turkestan: East Turkestan is the homeland of the Uyghur people. It has been under the communist China' s occupation since 1949. East Turkestan is located in the Central Asia, and borders China and Mongolia to the east, Russia to the north, Kazakhstan, Kyrgyzstan, Tajikistan, Afghanistan, Pakistan and India to the west, and Tibet to the south. The landmass of East Turkestan is bigger than whole Western Europe. Its colonial name is “Xinjiang”, which means "the new territory" or "the new frontier" in Chinese. China officially designated the East Turkestan a Uyghur autonomous region in 1955, but in reality it has never become a genuine autonomous region. The Chinese government reported the number of the Uyghur population in East Turkestan as 10,000,370 (refer to the 2010 Chinese census), but some Uyghur sources estimate the real population of Uyghurs to be around 20 million.
Provide coverage for a comprehensive and intensive feeding program for my son and children like my son.
Eating for many people is similar to breathing; it’s natural and doesn’t require much effort. However, for my son, Nolan and for many other children eating is not enjoyable due to medical problems. Eating is skill that needs to be learned and desired. Nolan from the moment he started eating he had difficulty. A comprehensive and intensive feeding program is recommended at this time, give the longstanding nature and severity of his food refusal. One doctor described his reflux out his nose as one of the worse cases he had ever seen. In addition, to reflux, Nolan was also diagnosed with low muscle tone and aspiration of thin liquids. The combination of those three disorders has prevented eating and drinking, as one feeding therapist described to me, from being a "pleasurable experience." Currently Nolan’s main source of nutrition is from nasogastric tube. In his short three years of life this is the third time and longest he required a feeding tube. In a few weeks Nolan will be having surgery to place a gastrostomy tube (also called a G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach. This tube will help Nolan maintain hydration and calories in order to help him grow and stay healthy. The need for a nasogastric tube was after a very painful and traumatic experience Nolan had this past October when his spleen for unknown reasons clotted and stopped working. The NG tube was and still is simply a quick and fast fix to provide nutrition to Nolan. As his pediatrician has pointed out to me, "being dependent on NG tube feeds indefinitely is not optimal due to poor nutritional variety, the expense and side of effects of daily tube feeds." Providing Nolan with an opportunity to learn to maintain his own nutrition is skill that will last him a life time, which is why I am pleading with Horizon to stop denying him coverage for the Children’s Hospital of Philadelphia Day Hospital Program. I was first denied because medical necessity hadn’t been established, according to the Horizon. A doctor from Chop had 1:1 review of the appeal which resulted in Nolan’s being denied because other means of therapy hadn’t been attempted first. They stated if I can’t prove that he had feeding therapy with a speech therapist and/or an occupational therapist and failure of these methods could result in overturning the denial. I documented to them proof he attending feeding therapist since he was discharge from NICU and only stopped when he could see a therapist more often at school. Nolan currently sees a speech therapist 5 days a week at school and his school’s Eat n Drinking System Team felt that too many therapists working with him would be counterproductive. Every feeding approach has been attempted and nothing has been able to provide Nolan with successful eating skills. Children Hospital of Philadelphia’s feeding clinic is an extreme road but necessary one at this point in Nolan’s life.
Prosecute the Pony abusers!
Recently a video surfaced on facebook of a young defenceless pony being viciously attacked. The attacker was Chloe Morgan of Llanelli she viciously abused an innocent pony tied to a wall. She was filmed striking the pony more then ten times with a whip because she was angry that the pony had bucked whilst she attempted to mount with no saddle. The pony bucking was due to her own lack of skills and the fact she is far to large for the small pony. The pony looked distressed and distraught. Repeatedly attempting to back away from the angry Chloe Morgan only to be relentlessly whipped and shouted out then further assaulted by the stable hand! This disgusting abuse was filmed by Chloe Williams daughter of the owners of the pony and the centre, Chloe Williams filmed this evil act and posted it on social media she thought it was funny. She also displays no remorse. Her father Paul Williams also abused the poor animal kicking the pony twice also witnessed at the end of the video . He should never be allowed to own or train people with animals again neither should Chloe Williams and especially not Chloe Morgan. Please sign this petition to make sure a prosecution is made! The RSPCA have visited the property and state there is an ongoing investigation. But according to the South Wales evening post when both the police and RSPCA visited they found no evidence of abuse. Yet we have all witnessed the evidence of abuse that the defenceless pony was subjected to and we want a prosecution! We pay/fund/support the RSPCA via donations to protect animals! We are aware they are a charity. We are aware of how many calls they receive. But we the people need to ensure that the RSPCA Protect innocent animals from the likes of Chloe Morgan, Chloe Williams and Paul Williams! Should this decision be out of their power then the government needs to make this happen! The police need to investigate! The CPS need to prosecute! These people need to be brought to justice!
Healthcare Approval for David Thompson!! #approvedavidnow
My dad, David Thompson, was diagnosed with stage 4 Non-Hodgkins Lymphoma in November of 2017. At diagnosis, my dad was given a 10% chance of survival. After 6 rounds of intense CHOP chemo, those statistics didn’t change. He was in remission but there was a 90% chance the cancer would return and it would return quickly. He would then be considered terminal. He received a stem cell transplant earlier this year which pushed his survival rate to 50%. With the help of this clinical trial of Keytruda, a drug in which the FDA has fast tracked for the use of Non-Hodgkins Lymphoma due to its amazing response rates, my dads odds of long term survival can go up to 70%-80%! Basically, my dad NEEDS this trial drug. Here’s the problem: My dad has clinical trial benefits which Blue Cross is DENYING him. Not only have they denied the trial, they have thus far refused to provide us a copy of the peer-to-peer denial so that we may respond via appeal. In fact, BCBS of Oklahoma claims they don’t even have their denial on file. The peer-to-peer denial was May 16th and yet we have no paperwork and no reason stated for denying at the peer-to-peer level. Basically, Blue Cross is now stonewalling any appeal efforts we could put forth. Blue Cross and Blue Shields of Oklahoma is shamelessly denying my dad this potentially life saving drug. We have under 240 hours to get my dad to Houston and get the drug administered before he is no longer eligible for the trial. For this reason, I am asking for YOUR help, your friends help, our state and local legislators help, the help of news media in both Oklahoma City and Houston, and ANYONE else with the knowledge and drive to help my dad get the treatment he needs! We have started a hashtag #ApproveDavidNow to help get the word out on social media and our goal is to get it trending. So please help us fight. His life depends on it.” #approvedavidnow We call on Blue Cross and Blue Shield to express blatant transparency with their patients and to promote honest and open health care!! Let’s get this trending!!! #approvedavidnow #approvedavidnow
Approve the lung cancer treatment my husband needs to stay out of a wheelchair
My husband Tony is bravely fighting stage 3 lung cancer, but our insurance company is refusing to cover the treatment our doctor recommends. Instead, they'll only agree to cover a cheaper option that our doctor believes will severely damage Tony's spinal cord and could leave him paralyzed. It’s been hard for our family to watch my husband suffer. To see one of the strongest men you know crying out in pain, unable to do everyday activities, is heartbreaking. It’s even worse when you know there is a treatment that could help end his suffering and could help return our lives to normal. Intensity-modulated radiation therapy (IMRT) is used every day for lung cancer, and Tony’s doctor says it is the best option for him due to the placement of his tumor. Other treatments would likely damage Tony’s spinal cord and put him in a wheelchair for life. Still, Blue Cross Blue Shield of Georgia has deemed it "medically unnecessary" -- they claim there are alternative treatments. But if our doctor says the other treatments could leave my husband paralyzed, are they real alternatives? We shouldn’t have to fight the cancer and our insurance company -- please support us in asking Blue Cross Blue Shield of Georgia to approve the IMRT my husband needs to save his life. We are on our second appeal. If we are forced to use the only treatment Blue Cross Blue Shield of Georgia will cover, Tony will likely end up in a wheelchair -- he won't be able to return to his job as a truck driver, and he'll be limited in participating in our sons' lives. Intensity-modulated radiation therapy is the only real choice for my husband -- it will protect his spinal cord, shrink the tumor, and allow for surgeons to remove the cancer from his lung. I have hope with the support of people like you, my husband will have a normal life again. www.gofundme.com/ugpdc44
State mandate for insurance coverage of metabolic formula in Michigan
There is currently no mandate for private insurance companies to cover metabolic formula in the state of Michigan. Metabolic formula for PKU and many other inborn errors if metabolism provides essential nutrients, calories, and specific amounts of individual amino acids or other nutrients that CANNOT be provided in foods alone. If these patients are unable to obtain their formula they can suffer debilitating side effects, become mentally disabled, or die. These disorders are diagnosed on newborn screening and are life long, but TREATABLE. If you have a child, they had a newborn screen at birth (unless you as a parent knowingly opted out). If diagnosed, treatment with metabolic formula typically begins during the first week of life and continues through adulthood. These patients are alive and thriving because of their formula. They are smart, funny, and caring children and adults. Funds that were previously available to cover metabolic formula in Michigan are dissolving. Formulas that were previously provided at wholesale pricing are now costing state programs HUNDREDS OF THOUSANDS of dollars per year. These very rare conditions do not have a large voice. As a registered dietitian in this rare community, I have been advocating every day on behalf of my patients and going to extreme lengths to ensure patients do not go a day without formula. If I am feeling frustrated, I cannot even begin to fathom what this must feel like as a parent or patient. A state mandate for metabolic formula coverage would reduce costs to state programs and prevent debilitating side effects and possible death for patients with rare inborn errors of metabolism. Most importantly, it would ensure access to formula and remove this burden from patients and parents who are faced with a rare disorder. Thank you for bringing attention to this issue!
Together we can help fight a disease impacting sickle cell trait carriers
My name is Cora Connor and I am writing you on behalf of the estimated 3.1 million Americans affected by Sickle Cell Trait, a common blood disorder, affecting more than three hundred million people worldwide. Individuals with this disorder only carry one defective gene and generally live normal lives. These individuals are at risk for kidney injury, as recently recognized by the NCAA, and other illness. Many people (Sickle Cell Trait carriers, family members, and even physicians) are unaware that there is a rare form of kidney cancer associated with sickle cell trait, called renal medullary carcinoma (RMC). Renal medullary carcinoma is a very aggressive form of kidney cancer and is almost exclusively seen in young African Americans, under the age of 30. The prognosis of these young patients is dismal. Typical survival is under 12 months. Renal medullary carcinoma was first discovered in 1995, but between 1995 and 2012, only 240 cases were reported to The North American Association of Central Cancer Registries (NAACCR). There are a number of areas of concern with regard to this cancer: We need to determine the true prevalence of RMC. Because we lack national health policy that reinforces education about sickle cell trait, many patients do not know their status, or their risk. Without standard screening tests, early detection is almost impossible. There has never been research funding for RMC, so treatment options are limited. Furthermore, most physicians are not familiar with the disease and lack knowledge to deal with this cancer effectively. When patients are able to reach doctors that have RMC expertise, they are usually out of state and many insurance plans will not allow their patients to leave the state of residence, even if there are no local options. This is particularly true for Medicaid covered children and young adults. As a result, many people are denied the option to receive expert care. We have assembled a multidisciplinary focus group, initially through support from The William Guy Forbeck Research Foundation, with physicians, scientists, and lay participant advocates from across the United States, Europe and the Middle East. The goal of this focus group is to begin to raise awareness and to elevate the research for RMC. We are appealing to the National Institutes of Health (NIH) to promote renal medullary carcinoma research, awareness and disease intervention initiatives across the United States. We need to educate the public, as well as health care providers, about sickle cell trait and renal medullary carcinoma. We also need to launch a screening program and create a registry for this disease in order for health care providers to work collaboratively, nationally and internationally, to treat this disease and bridge the gap that currently exists in meeting the health care needs of the individuals suffering from this disease. Thank you for your time and consideration. Respectfully, Cora Connor