ROSE TRANSPARENCY ACT

𝙍𝙤𝙨𝙚 𝙏𝙧𝙖𝙣𝙨𝙥𝙖𝙧𝙚𝙣𝙘𝙮 𝘼𝙘𝙩 🌹 – In honor of my mom, Rose, who passed away from a sepsis infection while battling mucosal melanoma on September 3rd, ending our journey at 30 months. I want to share a bit about her journey and how she was diagnosed. My mom, Rose, had struggled with hemorrhoids after my childbirth, so it was not unusual for her to experience them. But in 2022, her hemorrhoids lasted longer than usual. After a couple of months with no relief, she finally had a biopsy conducted in Phoenix. The results were devastating. She was diagnosed with stage 4 mucosal melanoma. Mucosal melanoma is a rare cancer unrelated to sun exposure. It arises in the mucous membranes and is often linked to chemical exposure. Because so few cases exist, there is very little knowledge about effective treatments even though cases have been slowly increasing. Her medical team in Alaska had limited knowledge, and it often felt like there was little interest in researching her rare cancer. We were told to meet with a specialist at a cancer center in Seattle. I traveled with her to explore whether she would qualify for TIL therapy only to learn that her insurance would not cover it. This not only cost us time but also drained our finances leaving us feeling defeated. The only takeaway was a list of clinical trials and a bit of knowledge but this was already 28 months into her journey. Finally, during a visit follow up visit with her oncologist, urged us to get into a clinical trial as there were no more options. This was 29 months into our journey. I cannot help but wish we had known about this sooner. My mom could have been stronger,more hopeful, and better equipped to face what was coming. ➡️➡️𝒸𝑜𝓃𝓉𝒾𝓃𝓊𝑒𝒹 𝒾𝓃 𝒸𝑜𝓂𝓂𝑒𝓃𝓉𝓈 #alaskastrong #alaskahealth #alaskacancer #AKCancerwarrior #akcommunity #alaskanative #mucosalmelanoma #fightcancer #clinicaltrials #hopeforall #fightforyourrights #fightforyourhealth

Resource limitations should not justify withholding care or information. Patients and families deserve the highest standard of service and complete transparency. It impacts individuals, families, and communities alike. • • • • #patientrights #healthcareforall #transparencyincare #righttoknow #yourhealth #alaskahealthcare

🚩𝕄𝕪 𝕄𝕠𝕞’𝕤 𝔹𝕚𝕠𝕞𝕒𝕣𝕜𝕖𝕣𝕤: 𝕎𝕙𝕒𝕥 𝕎𝕖 𝕃𝕖𝕒𝕣𝕟𝕖𝕕🚩 This is a copy of my mom’s biomarker results, given to us around month 29/30 of her journey. They showed that the immunotherapy she had been receiving for over a year likely would not have worked. Her TMB was low and PD-L1 was not detected, meaning her tumor had few mutations and did not express the protein that helps some immunotherapies work. Reading this was heartbreaking because it confirmed what we had already seen, the treatment wasn’t working. It left us discouraged and cost precious time. If we had known this in the beginning, things could have been different. Instead, she went through treatment that caused side effects, including hypothyroidism, without the benefit we were all hoping for. 𝙏𝙝𝙞𝙨 𝙞𝙨 𝙬𝙝𝙮 𝙝𝙖𝙫𝙞𝙣𝙜 𝙩𝙝𝙞𝙨 𝙞𝙣𝙛𝙤𝙧𝙢𝙖𝙩𝙞𝙤𝙣 𝙚𝙖𝙧𝙡𝙮 𝙢𝙖𝙩𝙩𝙚𝙧𝙨 𝙨𝙤 𝙢𝙪𝙘𝙝. ✨𝕌𝕟𝕕𝕖𝕣𝕤𝕥𝕒𝕟𝕕𝕚𝕟𝕘 𝕋𝕦𝕞𝕠𝕣 𝕄𝕒𝕣𝕜𝕖𝕣𝕤: 𝕋𝕄𝔹 & ℙ𝔻-𝕃𝟙✨ When facing cancer, knowledge is power. Two important tests that can guide treatment are Tumor Mutational Burden (TMB) and PD-L1. 𝐓𝐌𝐁 measures how many genetic mutations a tumor has. In a higher TMB can mean the immune system might better recognize the tumor, making certain immunotherapies more effective. Scale:Low(1-5) Inter(10-19) High (20+) 📍 My mom’s result: 5 (Low) 𝐏𝐃-𝐋𝟏 is a protein some tumors use to hide from the immune system. Knowing PD-L1 levels can help determine whether immunotherapy could be a good option. But here’s the key: these results are pieces of a bigger puzzle. Neither TMB nor PD-L1 alone can tell the full story. They need to be considered alongside other genetic markers, tumor type, and overall health. 🛑🛑 𝕋𝕒𝕜𝕖𝕒𝕨𝕒𝕪 🛑🛑 Ask for these tests early. Understanding your results can open doors to treatments, clinical trials, or therapies that might not be considered otherwise. Knowledge gives you choice and choice is power! • • #usahealthcare #alaskahealth #alaska #mucosalmelanoma #juneau #anchorage #fairbanks #alaskanative #alaskan #knowledgeispower

One of the biggest things I wish I had known from the beginning was the importance of finding a support group. While researching success stories from clinical trials, I discovered that one of the survivors of TIL- therapy was running a Facebook support group called Mucosal Warriors. I decided to follow it, and I was astonished to realize that my mom and I were not alone. When I shared this with her, she was so relieved to know that she wasn’t the only one facing this rare cancer. The group had over 2,000 members, all active posters updating their journeys daily, and new members joining every day. What makes these groups so special is that they bring together patients currently receiving treatment or family members supporting loved ones, providing continuous nationwide support and even international. Members were seeing doctors at top institutions like Stanford, UCLA, and MD Anderson, so the variety of experiences and insights was incredible. I was able to speak with people who had participated in clinical trials or undergone specific therapies, and I learned about different genetic variants and tests that were being done elsewhere. This is so important because, if I had known about these groups from the start, I would have realized that certain tests we weren’t receiving were standard requirements at these prestigious hospitals. Access to this kind of knowledge early on can completely change a patient’s treatment path. 🛑🛑 I SUGGEST 🛑🛑 Finding a support group for your specific cancer can be a lifeline. My mom found comfort knowing she wasn’t alone in her symptoms or treatment journey, hearing others share the same experiences made a huge difference. It also helped us know what questions to start asking. 🛑🛑 BE AWARE 🛑🛑 Her doctor advised against reading things online, saying it was not accurate. But from what I could see after crosschecking and fact checking everything, the information was true and the tests I was asking about were based on what I was learning from these groups. • • • • • • • • • • • • #support #supportgroups #mucosalmelanoma #melanoma #health #alaska #juneau #anchorage

This is a treatment roadmap I created for my mom before any additional mutations were identified. Her Alaska team later provided me with a primary BRAF genetic result, E586k, from the host tumor. This was tested on the original biopsy conducted in Phoenix prior to her 2023 diagnosis. Unfortunately, this information wasn’t shared with me until 28/30 months into her journey. 𝐓𝐡𝐢𝐬 𝐢𝐬 𝐰𝐡𝐲 𝐢𝐭 𝐢𝐬 𝐬𝐨 𝐢𝐦𝐩𝐨𝐫𝐭𝐚𝐧𝐭 𝐭𝐨 𝐫𝐞𝐜𝐞𝐢𝐯𝐞 𝐭𝐡𝐢𝐬 𝐢𝐧𝐟𝐨𝐫𝐦𝐚𝐭𝐢𝐨𝐧 𝐟𝐫𝐨𝐦 𝐭𝐡𝐞 𝐬𝐭𝐚𝐫𝐭. 𝐘𝐨𝐮 𝐨𝐫 𝐲𝐨𝐮𝐫 𝐥𝐨𝐯𝐞𝐝 𝐨𝐧𝐞 𝐜𝐚𝐧 𝐞𝐱𝐩𝐥𝐨𝐫𝐞 𝐚𝐥𝐥 𝐚𝐯𝐚𝐢𝐥𝐚𝐛𝐥𝐞 𝐨𝐩𝐭𝐢𝐨𝐧𝐬 𝐚𝐧𝐝 𝐧𝐚𝐯𝐢𝐠𝐚𝐭𝐞 𝐭𝐫𝐞𝐚𝐭𝐦𝐞𝐧𝐭 𝐭𝐚𝐢𝐥𝐨𝐫𝐞𝐝 𝐭𝐨 𝐲𝐨𝐮𝐫 𝐬𝐩𝐞𝐜𝐢𝐟𝐢𝐜 𝐠𝐞𝐧𝐞𝐭𝐢𝐜 𝐯𝐚𝐫𝐢𝐚𝐧𝐭𝐬. ➡️ 【�ＨＯＷ ＩＴ ＷＯＲＫＳ】 ⬅️ The tumor starts with a ‘host’ genetic variant, think of it as the host of the party. As treatment begins, new variants can emerge, like new guests joining the party, creating more possibilities for additional treatment options. In my mom’s case, her host variant was BRAF E586K (Class 2 ). After receiving immunotherapy and radiation, a new ‘guest’ emerged: the genetics branched into a CDKN2A variant. For her, treatment options were limited to clinical trials targeting BRAF non v600 or CDKN2A. • • • • • • • • • • • • #treatment #fightcancer #cancerjourney #cancerwarrior #alaskalife #cancerwarrior #healthcareadvocacy #treatmentroadmap #rosetransparencyact #yourlifeyourchoice #mucosalmelanoma

✨ 𝕎𝕙𝕒𝕥 𝕀 𝕕𝕚𝕕 𝕗𝕠𝕣 𝕞𝕪 𝕞𝕠𝕞 ✨ What I did was go through all the clinical trials that looked like they could be good possibilities for my mom based on her genetic variants. I narrowed them down by reading articles about their progress, checking the testing results that were being shared, asking my mucosal warriors group and paying attention to which programs seemed to be moving forward. From there, I focused on the steps that could actually get us closer: ___________________ ➡️ 𝐂𝐡𝐞𝐜𝐤 𝐜𝐥𝐢𝐧𝐢𝐜𝐚𝐥 𝐭𝐫𝐢𝐚𝐥𝐬: I looked at every trial that seemed like a possible fit and compared them against my mom’s case. ➡️ 𝐑𝐞𝐚𝐝 𝐮𝐩𝐝𝐚𝐭𝐞𝐬: I dug into articles and reports to see what kind of progress each program was making. ➡️ 𝐂𝐨𝐧𝐟𝐢𝐫𝐦 𝐫𝐞𝐬𝐮𝐥𝐭𝐬: I paid attention to the testing data being released to figure out which ones looked most promising. ➡️ 𝐂𝐨𝐧𝐭𝐚𝐜𝐭 𝐭𝐡𝐞 𝐩𝐡𝐚𝐫𝐦𝐚𝐜𝐞𝐮𝐭𝐢𝐜𝐚𝐥 𝐜𝐨𝐦𝐩𝐚𝐧𝐢𝐞𝐬: I checked their websites for expanded access options, sometimes there’s a form or link, emailed the manufacturer direct. Other times it has to come directly from a physician, only found that out after emailing them directly. ➡️ 𝐖𝐨𝐫𝐤 𝐰𝐢𝐭𝐡 𝐭𝐡𝐞 𝐝𝐨𝐜𝐭𝐨𝐫: Once I had the information, I brought it to my mom’s doctor so we could move forward with the FDA’s Form 3926. _________________ ✨✨My research✨✨ When I contacted the FDA the process was surprisingly easy. I waited only one minute to speak directly with a representative who walked me through the correct steps so I could move forward seamlessly. From my research I learned that once the pharmaceutical company gives approval the FDA can authorize expanded access within just a few hours. ✨ upon urgent usage - your physician can call the phone number or email. The hardest part isn’t the paperwork. It’s finding a drug that’s actually available since access depends on whether the company has enough manufactured and circulating within the trial. 💊 • • • • • #expandedaccess #health #healthcare #alaska #cancer #fightcancer #rosetransparencyact

🌹 How to Advocate for Your Loved One 🌹 Having the right paperwork in place makes it easier to protect your loved one’s wishes. ✨ Key Steps: (3 important forms to get notarized at the same time) ✔️ Get documents notarized: many hospitals have a notary on staff. ✔️ Power of Attorney (POA): lets you handle finances/decisions while they’re alive. ✔️ Health Care Directive (Advance Directive): outlines medical wishes and who can make decisions if they cannot. ✔️ Will: after passing, the will must go through probate court, which gives the executor authority to settle finances, estates, and access medical records. ⚖️ Important to Know: • POA ends when a person passes. • Only the executor of the will (or court-appointed representative) can handle matters after death. Preparation = Advocacy 💜 • • • • • • • • • #advocacymatters #patientrights #healthadvocacy #rosetransparencyact #alaskacommunity #alaskahealth #alaskacancer #cancerawarenessalaska #alaskaadvocacy #knowyourrights #familyadvocacy #healthjustice #caregiverstrong #protectyourlovedones

💛 Alaska, let’s take action together! In 2025, an estimated 3,670 Alaskans will be diagnosed with cancer, and 1,120 will lose their lives. Breast, lung, colorectal, and prostate cancers impact our families and communities every day. Knowledge is power. The Rose Transparency Act is fighting to make sure patients have clear, timely, and accurate information about their treatment options, clinical trials, and access to potentially life-saving therapies. Early detection and informed choices save lives and every Alaskan deserves that chance. 🌿💪 Every action counts. 🌟 Petition link in bio. 📌 Source: American Cancer Society, 2025 • • • • • • • #petition #alaska #alaskan #fightcancer #cancer #rosetransparencyact #alaskanhealthcare #healthcare #alaskannative #communitysupport #alaskaadvocacy #patientempowerment #cancerawareness

📊 Cancer (Malignant Neoplasms) is Alaska’s #1 cause of death. In 2023, 1,057 Alaskans died from cancer, about 1 in every 750 people. The age-adjusted death rate was 134.4 per 100,000, slightly down from 2022. (Source: Alaska Vital Statistics 2023 Annual Report, Alaska Health Analytics & Vital Records) 🔎 Top cancer deaths in 2023: • Lung: 220 • Colorectal: 111 • Pancreas: 75 • Breast (women only): 63 • Prostate: 59 • Liver & bile ducts: 57 ⚖️ Why age-adjusted? It levels the playing field so we can compare fairly across time and groups, removing the effects of different age distributions. ➡️ The numbers show progress, but also highlight disparities, especially for Alaska Native people and rural communities. ✨ Awareness, prevention, early detection, and equal access to care save lives. #alaskahealth #alaskacancer #cancer #numbersdontlie

Patients deserve choices. Know your options! Learn about the FDA’s Right to Try pathway. - - - - - - #righttotry #fda #alaska #alaskaproud